DR. VIROSLAV
I have said Dewie and I have had help coming to accept Dewie’s ALS and what her disease means for us. There were the support groups where Dewie and I could see that we are not the first to go along this path. Others have gone before us and are on this path now just as we are and they gave us good advice. “Prepare early,” they said, “Get things before you need them.” And “It’s better to have a wheelchair in the corner waiting for you than to need one and have to wait for one.” And “Its better to get a feeding tube while you can still eat than to lose a lot of weight before you decide to get one,” and so on. All of this is not only good advice – but it also presupposes acceptance. Preparation aids acceptance and as we began to follow the advice we became more accustomed to the idea of where our lives were headed. We had seen in the examples of others how life can be lived with ALS.
Then there was Dr. Viroslav.
Dr. Viroslav is the pulmonologist Dewie was referred to shortly after she received her diagnosis but before she had developed any noticable breathing difficulty. When we went for our first appointment with him, Dewie was given a breathing test to measure her loss of lung capacity. The normal progression of ALS is to eventually weaken the muscle that allows us to breathe, the diaphram. As the diaphram weakens, the patient’s breathing becomes ever more shallow and her cough becomes ever more weak until she dies from respiratory failure and/or pneumonia.
Dewie’s capacity was at 80 percent of normal. Dr. Viroslav asked us, “Why did they send you to see me? You don’t need me yet.” We replied that we didn’t know but that since Dewie had ALS, it seemed like a good idea to see a pulmonologist. He said, “You will need me eventually. I am the one who will take care of you. The neurologists can make the diagnosis and they can track your progress, but eventually you will need a pulmonoligist and your neurologist won’t be able to help you. But at 80 percent capacity, you don’t need me yet. Lets take this time to let me tell you about your disease. Maybe no one has explained this to you yet.” No one had.
He continued, “Your disease will eventually take away all of your muscles, one-by-one. The good news is that these days we have the ability to replace the function of everything you will loose. You can eat without chewing or swallowing when you loose those abilities by using a feeding tube. You can breathe with a bipap machine or with a ventillator. Portable ventillators aren’t much bigger than a laptop computer these days and they’re very reliable. We can allow you to speak using a computer and you can control the computer with just your eyes when your hands quit working. Modern power wheelchairs are very good and allow mobility for you even when you are completely paralyzed.”
“They say you have a fatal disease. Actually, you always have. It’s called ‘life’. But even though ALS is considered fatal, if you choose to accept all the medical interventions that are available, you’re going to have to find something else to die from! The problem is that living with all of that stuff is a big adjustment and not everybody chooses to do it. So here’s my prescription for you today: Be happy!”
“Whatever that means for you, do it now! Don’t wait – be happy now. Because, if you’re happy with your life and I tell you at some point in the future that you need a ventillator, you’re more likely to give it a try.” He gave us some time to let that idea sink in. The advice hit home. Being happy begins with acceptance of your situation and Dr. Viroslav offered us the good news that Dewie’s life could continue if she wanted it to. But clearly, who would want more of life with ALS if they weren’t happy. Luckily for us and unknown to Dr. Viroslav, Dewie had a head start on happiness. It is literally her natural state. It is her greatest gift.
He continued, “I learned a long time ago that I can’t make these decisions for my patients and they don’t always go along with my recommendations. But I have found that if you are happy with your life, you are more likely to say ‘Yes’ when I recommend something.” It was good advice - the best. We took it to heart and have seen its benefit over and over again.
He finished, “You know,” he said, “If you have ALS, they say you will die within two to five years from diagnosis, but in reality, nobody knows how long you will live. You might live a long time with ALS. Or you might die on the way home from my office in an accident. It's not something you ultimately have much control over. But what you have absolute control over is what you are going to do right now. What are you going to do today? How are you going to feel right now? That you can control!”
Very empowering. Very positive. Dr. Viroslav’s prescription to ‘Be Happy’ was the best advice we have ever gotten. He is like no other doctor we have ever known.
