Not quite a solo Journey, but more of an Expedition

I’m not sure who Walter Mitty is (Edit: Oh! He’s a fictional character in “The Secret Life of Walter Mitty” by James Thurber), but I thought the above quote fit nicely into setting the overall character here, for the experiences to come.

This has not been a solo voyage by any means, oh no, quite the opposite! Managing scoliosis takes teamwork, whether you realize it or not. Quite like an expedition into the unknown, a team of doctors, surgeons, nurses, physical therapists, orthotics folks, parents, grandparents, friends, and everyone in between… all together, are there to support you in reaching that destination of living your best life possible. I know everyone’s experiences may differ, as well as opinions, but more often than not, I have found solace in knowing that I am not alone in this journey…err…expedition. That said, I wanted to give a heart-felt THANK YOU to everyone involved in my scoliosis care over the past 30 or so years. It hasn’t always been smooth sailing (precariously rocked the boat a few times), but perhaps I’ve been a little more steady knowing you are all there.

So, what is the purpose of this blog? I’m afraid that I cannot answer that question right now. I just don’t know. Maybe it is for inspiration or to recollect on a significant portion of my past. Perhaps to connect with others around the world who have scoliosis… or a combination of things? And maybe it has no purpose at all. There are no right or wrong answers here. In the words of Forrest Gump: I don’t know if we each have a destiny, or if we’re all just floatin’ around accidental-like on a breeze. But I, I think maybe it’s both. Whatever the reason for my thoughts here, I would like to think it at least serves as an inspiration to someone, somewhere in this crazy world, even if it’s just myself (Did I find my answer? We’ll see).

The details of my early scoliosis history are quite murky, as I cannot recall exactly how or when I was first diagnosed with scoliosis, or even what degree my curve was. What I do remember is that sometime between kindergarten and third grade, I was incidentally discovered to have an abnormal “hump” to my back while wearing a bathing suit, and subsequently, visited a doctor who made the diagnosis. I still have that hump (although not as severe as others), and occasionally refer to myself as “Quasimodo, the Hunchback,” (in good humor, really) because, well, I do have a hunchback (kyphosis). I can honestly say that I never thought of myself as being “ugly” due to my deformity. I was slightly guarded about it, sure, and always changed quickly or in the privacy of a bathroom stall instead of in the locker room during gym class. But the few times I was asked by my peers about my appearance, I was happy to explain.

I first started wearing a rigid back brace at age 9 for 23 hours a day, and boy, what a relief it was to have it off for just one hour a day! To be able to bend, stretch, itch, and have the cool air dry the accumulated sweat- ahhh, the greatest feeling in the world! I was required to wear it to school, to bed, practically everywhere at every time besides during a shower or bath. As a child, I loved running, and thankfully, the brace was never really a hindrance in that aspect. In fact, I was still faster than most of the children my age at my elementary school, boys or girls, when wearing the brace! If I was interested in gymnastics, however, it would have been a different story. I eventually went through three different braces over a span of 3-4 years before it was determined to be a failure.

When my curve reached 45° at 12 years old, I had a 7-hour spinal fusion surgery that ultimately resulted in two Harrington rods placed on either side of my spine, held in place with screws and further secured with bone grafts from shaved bone off of my own pelvis. Recovery took a little longer than usual as I had to learn to walk again. Eventually, I recovered and tried to resume life as normally as possible. But my life was never quite the same after that. A few years later (around age 14), my surgeon suggested that in order to prevent further complications, I not run at all as it was discovered on x-ray to be placing significant stress on the free vertebra directly below the fused portion by causing joint degeneration and spur formation. The news was a devastating blow both physically and mentally as I thoroughly enjoyed running and found it almost as necessary as breathing. Now that took some time to get used to.

Here we are, over 20 years later, and I find that I do not have much to add at this point. I have aches and pain, mostly in my sacroiliac joint area (SI joints); I have to be careful with my right shoulder as extending it through a certain degree of range of motion will painfully dislocate it; I have a strange, permanent leather-like numbness to the skin between my shoulder blades (my “danger zone”); and an occasional, what I can only best describe it as, a deep, itching sensation to my right thigh. For the last 10-15 years, my scoliosis sat idle; I just had radiographs taken 3 weeks ago, and have yet to hear of the progress of my deformity. I don’t even know if the rods in my back are still correctly in place. I’ll update things here when I have any news.

In the meantime, my mother and I tediously search through old family photos to find all things scoliosis-related. The majority of my pictures here will be old, scanned film photos before we had digital capabilities (from the 1990s), so the quality may not be great. But they are records of my past that will hopefully tell my scoliosis story and give more insight into my crooked life. 

Stay healthy out there!

Until next time,

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