March 31st, 2011 - Three days ago when riding my bike enjoying the nice weather I had an accident and fractured my right elbow. As luck would have it, it's one of those fractures that can not properly heal on its own so I'll be having surgery soon to repair it. The episode however did make me think about Chiari in a couple of ways.

First, I was thankful for wearing a helmet. Since decompression 11 years ago, I have been wearing my helmet every time I ride. When I hit the sidewalk my elbow and head took the blow. My elbow snapped but my head is absolutely fine. I was really impressed with the manner in which the helmet dissipated the force of the blow. All Chiari patients engaging in activities where the head is at risk of injury should wear a helmet. This includes not only cycling but motor biking, skating, climbing and skiing.

Second, I was thankful that I've been enjoying cycling the past several years since decompression. I was fortunate to have an excellent recovery from Chiari and enrich my life again with both physical and mental activities. Fracturing an arm seems a small price to pay to be fully active again. I have absolutely no complaints. At this point, I know it is simply a question of being patient, going with the flow of surgery, immobilization, and recovery, and I will be back on the bike in a few weeks. What I thought about however was the value of patience.

We all know that broken bones heal in a few weeks most of the time. Even if we have never experienced a fracture ourselves, we have all seen people over the years get fractures and recover from them. While the next few weeks will be inconvenient for me, I can muster the patience required to deal with it in good spirits. There's much value to patience in this regard. It will keep me on track and prevent me from getting depressed.

Things were very different when I was struggling years ago with Chiari. The symptoms of Chiari are peculiar and foreign. When Chiari symptoms emerge you can not identify with them nor do you know anyone who has. Of course, it comes on top of physicians who usually do not know what to make of it and attempt to treat you with antidepressants as is their all-to-often-course-of-last-resort in situations where they can not observe any objective signs or symptoms. As time goes on, you only get worse. It becomes impossible to muster the patience required to endure through to recovery because you don't know what to expect. It is not like the flu where you had it before and you know you will get better in a couple of weeks at most. When you get the flu you simply produce the patience needed to persist a couple of weeks and as badly as you might feel, you can still find humor in a good joke. It's not like breast or prostate cancer where you have seen some friends or relatives go through it and emerge as survivors. As unwanted as cancer is, you know about it and you have some reference about it which enables you to call forth the patience required to cope with it if you should fall victim to it.

Chiari is different. It is the unknown about it that makes applying patience nearly impossible. If you have cancer, the doctor assures you they understand it and can treat it and they can tell you in detail exactly what will transpire. When you have Chiari, most doctors look at you like you're nuts.

So my message here is one of understanding that Chiari like other diseases and accidents can also play out to an acceptable outcome so put despair aside and muster your patience to deal with it. You'll need a lot of patience for sure, the kind of patience you would need with a diagnosis of cancer as opposed to the flu but you can do it. You can do it because you have a reference point now in people like myself and others who have prevailed over Chiari and are able to communicate it to you though terrific web sites like this one.

We live in a wonderful age with wonderful technologies like the Internet. These enabling technologies make it possible to provide information and expectations to patients with unusual diseases like Chiari, to give them a needed reference point by which they can measure out the patience needed to prevail. Reference points are facilitated by awareness. Awareness is the key. Patients can not measure out the patience they need to deal with a disease without awareness, not just their own awareness but the awareness of care givers as well.

While you go forth to deal with Chiari apply patience. You will get through it. And, when you ultimately prevail as I know you will, remember to help spread awareness by supporting organizations like this one and informing your friends and relatives. The more we can spread awareness as a community, the easier it will be for newly diagnosed Chiari patients to understand what they are dealing with and enable them to measure out the patience they will need to prevent falling into despair and depression and ultimately return to wellness and happiness.

Ed. Note: The opinions expressed above are solely those of the author. They do not represent the opinions of the editor, publisher, or this publication. Mr. D'Alonzo is not a medical doctor and does not give medical advice. Anyone with a medical problem is strongly encouraged to seek professional medical care.