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(Place at the end of Epilogue)

December 17, 2019

It's the week before Christmas, one of favorite weeks of the year. Holiday packages are arriving; decorations and lights have been hung; Christmas carols are playing on the radio; silver bells are ringing in the streets and echoing from church steeples everywhere.

I find myself sitting with Holly at Penn once again, this time in the Medical Genetics Department. It is busy for a weekday, patients all bundled up, coming in from the cold and sleet outside in the  Philadelphia afternoon.

I see a small woman hobble by me on crutches. She smiles as we make eye contact. I can tell she has OI too. It's a rare occurrence, encountering someone else with OI.

I do love visiting with my favorite doctor, Dr. Kallish, every six months. This is supposed to be another routine check-up. Dr. Kallish is bright, young, understanding, encouraging and  honest. She knows more about Osteogenisus Imperfecta than anyone I have ever met in my life.

There is plenty of good news to share with Dr. Kallish and her assistant, Anne. I feel great! I have been dieting recently and have lost weight. I feel and look better. Plus I find it easier to transfer myself with less weight, with  not as much strain on my back and arms.

I am exercising more often. I haven't had any significant  pain for a while. No broken bones or stress fractures.My life is happy with Holly, Katie and Bud. I'm looking forward to the upcoming holidays like never before. I've found peace in my heart.

There is only one negative item I bring up near the end of our appointment. The progressing scoliosis of my back.

I admit, it takes a bit longer to get dressed in the morning now. I also admit, I do lose my balance at times when I do transfer. I seem to need support for my back all the time. I can't sit up erect any longer without some sort of back support. I'm not in any back pain. I've learned to live with it, annoying as my back problems are, and chalk it up to a by-product of my OI .

Sometimes I am concerned about my upper torso slowing rotating to the left. I joke about it, that someday I might be able to see behind me without really trying. But it is weird, and I know I look strange, but when didn't I look "strange" during my life?

Dr. Kallish again floats the idea of consulting with a spine surgeon. I have disregarded this suggestion in the past, feeling that my surgery and reconstruction days are over. Now, here in the autumn of my life, quality of life is key. I don't want to endure another big operation. With it goes the recuperation, the therapy and the pain. Will I be able to sit up? Will I be able to transfer myself and get around in my wheelchair? Or will the surgery leave me even more limited than I am now?

She points out that quality of life is the point in seeing Dr. Arlet, the spine doctor. Right now, my quality of life is good but can be better. It would be a shame, since I feel so good otherwise  at 63 years old, and may have another twenty years of living to go, if my back were to spoil it all.

"We want to keep you feeling this good ," she says. To do so may mean being proactive rather than reactive...sooner than later.

For the first time , maybe since I was a kid, Dr. Kallish points out what may occur in the future. The scoliosis may get so bad, it may  become life threatening.

I haven't heard that my OI may eventually kill me in a very long time.

The various doctors have always told me to be careful about lung infections, especially things like pneumonia and bronchitis. Since my lungs cannot expand like a "normal" person ( mine can only expand about halfway) due to my small body, any issues with the lungs could be deadly.

Now, with the slowly creeping scoliosis, organs are even more cramped than before. Even my heart is in danger, as everything is  being "smooshed" to the left.

Maybe the spine doctor, after reviewing the x-rays, will want to just observe for a year or two. Or maybe the recommendation will be to do surgery before it's too late to do anything.

So I will make an appointment to see the spine doctor after the new year. We wish Dr. Kallish and Anne a Merry Christmas. I will see them again in May, when it is warmer and the spring flowers are blooming, and baseball has started- the season of hope and renewal.

In the car, I ponder the situation. I don't have much of a choice. I have never been one to whine and say "Ah, poor me!" But it does suck to go through a life of broken bones, come out on the other side feeling better than ever, only to know I may not be around too much longer because of my lifelong friend, OI.

Still, I remain determined never to give up, never to give in, and to keep fighting, as hard as I can for as long as I can.

It's the only way I have approached my life. Why change now?

Thus, the journey continues. And with God's grace, I will still be kicking for many years to come.