My friend George Johnston: wisdom in the face of disaster

My friend George Johnston, who is about my age, has lived with Parkinson Disease for a very long time. He's had a brain implant that modulates some of the more severe effects of Parkinson, but make no mistake, George's life has been turned inside out and upside down by this disease. Even so, soon after his brain surgery, George was deployed as a Red Cross volunteer in New Orleans following Hurricane Katrina. He has seen personal disaster and disaster on a massive scale.

George is active with the Parkinson Association of Northern California, and he writes an insightful column for the local newsletter. He wrote this last week following the Haiti earthquake, and his wisdom and perspective is worth reading. His column is reprinted in full below, and his dog's name is Akua:

Reflections Outside the Box
By George Johnston

It is amazing to me sometimes how I become so obsessed with my Parkinsons that anything outside that box has no meaning to me. Having lived with what Michael J. Fox calls the “unwelcome stranger” for nigh on 16 years now, it has become so woven into every fabric and corner of my life that everything that I say or do seems to be colored with a PD background. I remember the interview that MJF did with Barbara Walters in the late 90’s, and she asked him “Is there ever any time during the day that you are not aware of the fact that you have Parkinsons”? With only a brief moment for reflection, he simply said, “No.”

It takes something powerful to pull me out of my awareness of my PD, but such was the case earlier this week, [I am writing this column on January 15], when Haiti was devastated by what I am sure will always be remembered by the people that live there as “The Earthquake”. For a moment, actually more than a moment, I was transfixed by the horror and terror that was created in all those peoples’ lives, and for many moments my PD was not important, not even memorable. There simply are some things that happen in this life that so transcend our own problems, they make those problems that we cherish and polish each day lose their significance.

What is happening in Haiti now has its lessons for those of us with lesser burdens to bear, and it was a lesson taught to me on August 29, 2005 when Hurricane Katrina hit New Orleans. Just 6 months earlier, on March 15, I had my DBS surgery. I was literally transformed from an invalid back into a functioning, albeit struggling, member of society. And seeing what was happening in New Orleans called out to me the way no tragedy of any scope had ever touch me before. Before you could whistle Dixie, I was at the Red Cross offices in Sacramento finding out what I could do with my newly found freedom from the physical manifestations of PD. I knew what it was like to have lost it all, and the pictures and stories of those in NO facing the same prospect galvanized my will. After long arguments with those at the Red Cross that said they weren’t going to send someone that had just had brain surgery into a disaster zone, and the help of my neurologist and neurosurgeon who were willing to go to bat for me and say “If he is willing to take the risk, he shouldn’t be treated differently than any other volunteer”, and after drafting and signing a waiver holding the Red Cross harmless from anything that happened to me if I were deployed into the NO area, three weeks after Katrina hit I was on my way to Louisiana with the first group of Red Cross volunteers deployed from Sacramento to this disaster.

I was assigned to a food kitchen in Belle Chase, Louisiana, about 10 miles south of downtown NO, and for three weeks worked with the best group of individuals I have ever had the opportunity to know, putting out 3,000 hot meals a day for some of those who had lost everything overnight. I stood in line with 25 year olds unloading water, food and other provisions from the back of 18 wheelers, and never broke a stride. Granted I took a nap every afternoon if I could, but others allowed me that. For those three weeks I was so swept up in the tragedy of other peoples lives, that PD seemed a distant concern, not a daily companion. I will always treasure those times, and equally treasure those doctors who skill and concern gave me the opportunity to experience once again what it meant to be a fully functional part of society again. One of the many lessons I learned from that trip was that having PD not only removes you from the joys of life, but the tragedies, also. For feeling and being a member of society requires that you participate in those tragedies, as well as the triumphs. Feeling happy and feeling sad are likewise similar: they are both feelings, and equally missed by those of us with PD.

Watching the situation in Haiti develop this week has caused me to revisit these memories many times, and I have to remind myself that my PD has advanced these last 4 and _ years, regardless of the surgery; that I am 58, not 53; and that a country with little or no government control or involvement in the life of its population is not a place for any civilian, non-disaster professional to be, with or without PD.

So I will sit this one out, contribute what I can financially, and hope that those stronger than myself will take this opportunity to involve themselves in assisting those in Haiti, both now and into the future, for just like NO, this situation will not be patched over or healed in a week, a month or a year. It will take decades for normalcy in any real sense to return to a region affected this way.

And for those of us who must sit on the sidelines and watch, we can also try to prepare ourselves in the event of a similar emergency happening in our neighborhood. Remember, those levies out there won’t last forever, and this is the home of the San Andreas Fault. And perhaps the best thing we can do to prepare for that emergency is by lessening the impact of our limitations on those charged with taking care of the situation in our neck of the woods. How do we do that? At minimum, [1] by making sure we have at least a one month surplus supply of our medications in a water tight container in our homes, where it will be the first thing to grab in the event that an emergency arises. [2] By keeping packed in a backpack several days supply of loose fitting and comfortable clothes that can be grabbed quickly. [3] By making sure that someone other that our spouse or partner who doesn’t live at the same address has our list of medications, doctors and other pertinent PD information. [4] By making sure we are on file with Medic Alert and that we wear the medic alert bracelet or medallion at all times.

I can personally attest to the fact from my experience with Katrina that emergency workers are relieved when they find people who have made these advance preparations. Just think for a moment what it would be like if you were along in a situation like this, scared, running out of medication, no change of clothes, no ability to communicate immediately to first responders with pertinent medical information about your condition. It is not a pretty sight. So, be prepared, it may be the best help those of us with PD have to offer.

And pray. Especially for those in Haiti who suffer from neurological disorders and survived the quake. Pray that they can be, [or by the time you read this, have been], found by compassionate first responders who will be able to asertain, understand and deal with their needs.