Resilience
On 29 August, 2005, hurricane Katrina hit the gulf coast of the United States with tremendous force and fury. In the aftermath of that terrific storm, I delivered in the neighborhood of one hundred FEMA trailers to Mississippi, Alabama, and Louisiana for the homeless victims of the hurricane. I could fill pages with descriptions of the damage, like the casino in Gulfport, MS that was hit by the storm surge. The entire first two floors of that huge building were nothing but the poured concrete floors and the structural steel that held up the upper floors showed no sign of anything having happened. The first two floors were wiped clean with no sign of any debris or detritus left behind—that includes the brick walls. It was just gone. This is not my focus, though. I’m thinking of a tree I saw.
As I was driving down Highway 49 in Mississippi, somewhere just a little bit north of Saucier, I saw a live oak that had been totally uprooted from the ground and blown about thirty yards from the crater it left behind. The tree was massive. Three of me could not have reach around its trunk. I know it was alive when the United States came into existence. It had withstood storms of many sizes and varieties over centuries, but the tremendous amounts of rain that came before the winds came ashore had loosened the soil sufficiently that the wind was able to uproot and cast the tree thirty yards from its home. The key to my thoughts lies not in its demise, but in the fact that it had not broken, other than some branches from impact with the ground. The live oak, in contrariety to the casino in Gulfport was resilient. It bowed and moved before the wind. What it could not overcome was the porosity of the soil that had been soaked and loosened by the rains.
What has this to do with CH?
I remember getting hit the first time back when I was eight or nine. I had gone over to sniff a hydrangea bush next to our house and got hit with the worst pain I had ever experienced. (Now, I would probably rate it a four or a five, but that was then.) We had no idea about CH and put it down to an allergy to hydrangea. Now, I know the scent was a trigger. When I was 23 (ish) I was diagnosed with CH, but we had no clue what to do with them, and I got hooked on opiates/opioids. I was running machinery in a textile bleach house that involved threading cloth between steam rollers (approximately 600˚), yet I frequently went to work so stoned I had to have someone else double-check my timecard. The pain was still very much there, though. After recognizing what was going on, I took myself off of the meds cold-turkey.
Fast-forward to the late 1990’s. We moved to Illinois to become a part of the family business, and I found a neurologist that knew something about CH. From the early 60’s to this point, other than that one short period when I was treated with narcotics, I had had no treatment for CH at all. We immediately started trials of all of the common, and some not so common, drugs for CH, focusing on Verapamil and Lithium. I did these in ever increasing doses until my cycle never ended, and I’ve been chronic since. This was before O2 was readily available for CH, and I went from a couple hits a day for two to three months twice a year to five to eight hits a day every day of the year. In my episodic days, (pre CH dot com) I would estimate the hits in the K5 to K7 range. I could function, though not well, during a thirty +/- minute attack. After going chronic, I was getting 45 minute to hour and a half attacks in the K7-K10 range, and I could tell you the time of day by how I felt.
During those early chronic days, I had trouble keeping work. We had sold the family business, and I was trying to do construction work. Fortunately, I found a boss who worked with me and allowed me to work on touch-ups, punch-lists, and service calls, which allowed me some flexibility in hours I worked. I remember one day, though, when I was working with the full crew doing a basement finish. The family was still living in the house, and while we were in the basement working, I got hit with a K9 and was over in the corner of the room, banging my head on the concrete floor. The crew knew to leave me alone, but at about this time, the lady had a group of women from her church over for a Bible study, and she decided to show them what we were doing. One of the ladies asked what was wrong with me, and Bob, my boss, said I get really bad headaches. She came over and put a hand on my shoulder (WRONG move!) and offered some Advil. I looked up at her with tears pouring, and snot running and said, “That’s like offering ‘Near Beer’ to an alcoholic,” and I went back to pounding my head on the floor. Bob explained there was nothing they could do for me and thanked her for offering. I’m sure those ladies thought I was demon-possessed. To be honest, I wouldn’t have discounted the possibility at the time, had I not known I couldn’t be. (I did get to apologize to the lady later, and we became good friends as a result.) This was the last time I ever worked with the rest of the crew.
In 1998, DJ started clusterheadaches.com, and changed the lives of clusterheads forever. For the first time, we had opportunity to connect with others who understand our pain, who understand our mental fragility that comes with the pain. I was as broke as a church mouse and couldn’t afford to even think about buying a computer, let alone to get on the internet, but my brother gave me the old computer we used in the business when we sold it. (It was a super-powerful 286, no less!) Juno sent one of those 30 day free trial disks in the mail, and I plugged it in and explored. I found CH dot com just a couple of months after it launched in the old, old, old format, and found hope. Frankly, at this time, I was at the end of my rope. God knew I needed help, and he sent it. After thirty days, I of course lost the service, so I started going to the library periodically, where I could get online for a whole thirty minutes a week, but then, they had a virus get into the system, and I went for over a year without being able to log on. Enter AOL. I got a free 30 day trial from them, and I couldn’t remember my password. I rejoined March 28, 2003, and you’ve been stuck with me since.
That is a long introduction trying to give a little background. Now I’ll try to share a little about my resilience.
To be honest, I have none. However, I am a Christian, and as such, I firmly believe God has a purpose in everything that comes into our lives. I know there are those here who don’t accept that, and I’m not here to try to dissuade you from your beliefs. All I know to do is share what I have learned and leave it to each to decide on his/her own. I’ll not preach (though I am trained. )
In the early 2000’s, I went through the phase I believe almost all of us go through at one point or another in our lives when we face serious health/relationship/financial/etc. issues. “Why me?” is the question we ask. We look about and see others who seem to have life totally under control. They live in nicer houses, drive nicer vehicles, don’t have financial or physical stresses when we have both. They can hold a job, and a better one than we can attain. Envy rears its ugly head, and we have a pity party. We begin to think God/the universe/whatever is against us, and it just isn’t fair. I’ve got a little secret. Life isn’t fair. Life just is.
One night as I lay on the floor, banging my office door on my right temple, and begging God to just let me die, the “Why me?” question was thrown back in my face. “Why not me?” began bouncing about in my head. Who would I rather have this affliction? No, I didn’t hear God speaking in an audible voice, but I firmly believe He is the one who put the thought there and kept it there. I began looking at CH in a totally different light. Jesus, the Christ, did not come to earth as a king. He was not born in a palace or a rich man’s house, but He was born in a cave that served as a stable for a khan in Bethlehem. I know, a lot of people slept in haystacks when traveling, etc., but I don’t know of all that many who were born in one.
Jesus came as the poorest of the poor—one who could relate to and identify with anyone. He did not put himself above any, though He was deserving of everything. He then used that position to reach out to the people’s needs around Him, turning away none but the self-righteous and proud. If the Christ could set aside what was rightfully His to be able to reach us, what right did I have to think I should be given anything different than I had? CH was not sent to me as a punishment but as an opportunity to reach out to other hurting people around me, and it became the catalyst for a jail ministry, a rescue mission ministry, food pantry, counselling, teaching, and on occasion even preaching. Other physical issues have arisen, disabling me, and have also been avenues of reaching out to others in need that I never would have had opportunity without CH.
When I developed the “Why not me?” attitude, my whole focus shifted. My resilience was multiplied to the point I now bend and go with the winds that strike. One day, perhaps, I may face a wind that will uproot me, but I hope I will be like that old live oak I referenced earlier. What I didn’t tell you about it was, in the ensuing months of pulling those trailers down to the gulf coast, I watched as the roots of that tree that were in contact with the ground took root where it lay, and life remained in the tree. Was it standing aright, giving shade and comfort to the cattle in the pasture? No. In fact, much of the tree was dead, but, part of it continued to live with all it had.
I learned a lot from that tree. Much of my life, due to my disability, could be looked at and considered “dead.” I, however, am doing all I can to take root again and flourish to the best I can. I cannot stand tall and give shade as I once did, but I can give shelter to those near the ground, as that tree did. What ever happened to that tree I don’t know. I’m sure it has been removed by now, but I hope it remains, living life to its best ability, and continues to be a lesson to those who pass by and take the time to notice and ponder. My purpose in life is to do the same.