I know I have been silent for a while, but I was waiting for “stuff” to happen that was worthy of writing about. Sooooo, “stuff” has happened: some good, some bad. My family and I took a direct hit from Hurricane Irma, I received a job – oh, and the last nugget is the best – I found out that the drugs are not working and a heart transplant is most likely in my future. Yay.
For those of you who do not know, getting ready for a hurricane is a HUGE ordeal. Shopping for tons of stuff you may, or may not use, amongst the entire community shopping, for the same EXACT items! It can be very consuming and frustrating. Water, of course, is the main commodity. It took me days to gather all the items for my well-planned arsenal against the coming storm. I was even able to find whistles for my family to wear around their necks in case of an emergency, and a dog lifejacket for my pudgy out-of-shape boy, as we live near the water and the storm was predicted to bring 15ft storm surges in our area (which was complete hype as we barely had water puddles). This storm ended up being a “wind” event and not a “water” event at all. In preparation you also need to take down every item outside; put away lawn furniture; take down patio lighting; trim trees; etcetera. It takes a huge toll on every family member to get ready. I am thankful we had a 2-week out notice because we needed every minute of it to be as prepared as we possibly could be. It is downright exhausting – physically and emotionally: especially for someone with an already diminished capacity of heart function.
The storm was originally predicted to skirt the East Coast of Florida, but Irma did not get that memo and decided to head towards the West Coast where we live. Even though we knew of Irma 2 weeks out, it wasn’t until about a day (or 2) out, that we knew for sure that it was coming for us. We were ready. Deciding to stay is a huge task. Do you risk getting caught on the road and weathering the storm, or do you “hunker down” (a favorite expression amongst weathermen) and hope your preparations are enough? In the end, we decided to stay. Our 1956 concrete-block, sloped-roof, Florida home had seen many a hurricane – hell, she was built for this. We just hoped we were right, and that all would be fine. Anyone who has lived through one of these natural disasters will tell you, “The waiting is the hardest part.” You spend weeks getting ready, and then you sit in your dark house (because all the windows are shuttered) and wait. Part of waiting brings with it the second-guessing on whether you should have left. Of going over in your head the checklist of whether all the “hatches are batten down.” Some get really bored. Others get really scared. And even others get angry at the chaos of it all and lash out.
My husband tells me, in the eerie quiet before the storm, just when the wind started blowing and you know that the “Beast” is coming, about how anxious he was in that he didn’t know what the outcome would be. Would we lose our roof? Would we really have 15ft storm surge? How long could we be without electricity? The worries seem to multiply by just talking about them; as if the anxiety itself could regenerate into new bots that found crevices you hadn’t thought of yet. And now – now it is too late because the Beast is already here. You always think there is something more you could have done to be sufficiently ready. I remember saying to my husband at that moment, that the feelings of anxiousness he felt, was exactly what I live with everyday with heart failure. I know the Beast is coming, and on the bad days, I can even feel the wind at my neck. She is ever-present and menacing. It is a tiring way to live, in that constant state of heightened awareness.
So Irma did make her appearance, and my little house withstood her wrath. For two hours the storm stalled and we were situated inside the eye-wall that entire time. We had some tree damage and our fence went over, but our roof wasn’t damaged and the storm surge never came. We were lucky and escaped the worst, we think. However, my neighborhood was hit hard. Lots of really old and big trees were felled. It was heartbreaking to see the damage to such a historical neighborhood. One of our famous homes in the neighborhood is the Thomas Edison home and Laboratory. They had some big trees fall but no damage to the home itself. I think, collectively, we all took a big sigh of relief that Irma decreased in strength before slamming into our community. We have lived in our home 20 years and have seen some hurricanes, but Irma, she was a brutish girl.
That was over two months ago and yet, there is still debris everywhere and trees that need to be attended to. It may take several more months to get back to “normal” around here. The truth is that the landscape has completely been disfigured in some areas, and therefore, be forever changed by Irma. But that is what the storms of our life do – they forever change us.
Even though Irma did cause havoc, she brought me a blessing too. Irma brought me a job. I was contacted by the Director of Education from one of our local colleges, right after Irma came through. He told me that one of their Interior Design Adjunct professors left the area, fleeing the storm, and decided not to return, and would I be interested in teaching this class? Of course, I said “yes.” I have been looking for an opportunity to keep my mind busy and negate all the free time I had for overthinking my situation. This was a perfect scenario for me.
Although nervous at my ability to convey all the information I hold on the subject of interior design, I dove in head first, with only one week to prepare my course outline for the entire semester. I believe that the class is well-developed and has a rhythm that makes sense, and more importantly, is translatable to real-world application. The entire point is to make sure these students can take this education out there and receive employment. It is my hope too, that my passion for this vocation and how we bring function, thoughtfulness and inclusiveness into client’s spaces, and how that positively affects those clients lives, will be something that the students remember; as what we do is so much more than “pillow-fluffing.” I have only been at it for 6 weeks, so I am not sure of my effectiveness as of yet, but I do know that I have enjoyed it. I hope to stay “well” enough to continue.
A month ago I received a new echocardiogram to determine my heart function after being on the meds for 6 months. We had big hopes, and even were told we could expect “high numbers” in response to the drugs. I had to wait 3 weeks to get the results of this test for various reasons. The wait is the hardest part again. It is maddening. Anyway, we traveled to Orlando last week and finally got the results we waited almost all year to hear: no change. Bleh. So all the side effects I have endured, have ended up with a big pile of nothing. “Well this is a bunch of bullshit,” I think to myself. One quick glance at my husband, and I knew he agreed. I think he suffers my side effects more than I do. So, obviously this is more than disappointing. In fact, it is a game-changer.
The mood of this visit was sobering. There was no “cheerleading section” of how I could get better, if I just did “xyz.” There were still charts of statistics that he pulled up for us to view. But these charts only showed my mortality rate if I stopped the meds. So the conversation went something like this:
Me: “So, what you are saying is that even though they are not working, I still have to take them?”
Doc: “Not only take them, but double them. 100mg a day.”
Me: (thinking – probably with my mouth gaped open) “What in the absolute fuck is happening here??!!”
Doc: “They are working, as your numbers would have been lower without them. And the statistics prove that your probability for death is greater without them.”(come to find out, what he meant was that these drugs, at the higher dosage, will give me about a 30% chance of preventing a sudden death incident)
Me: (thinking) “Fuck! No. Not fucking doing it.”
Ok, so you get the gist: once again, I am not happy at the drugs apparently being such an “integral part of my treatment,” but not actually doing much but making me sick and miserable. Just doesn’t make sense to me.
I left this appointment understanding that my chances of recovery were no longer on the table; that my current level of function would not improve and that I was to “run with it” until heart transplant. Well, this sucks. I never wanted a heart transplant. From the beginning, we were seeing these specialists as a way to avoid transplant. I am disheartened – no pun intended.
So taking this insanely high dosage of meds is not open for negotiation with the doctor either. Part of the deal to being accepted for a transplant, is the willingness to accept the drugs. The doctor reminded me again that after transplant, the drugs are much worse – and pointed out that some of them causes tremors. “That is helpful Doc, thanks.” ugh. Don’t get me wrong though, I still admire and respect this doctor. I will do whatever he tells me to. I still think my best chance at living a long life will happen with him. I cannot explain how relieved and happy I am to have him, and to lay my life in his hands; I trust him explicitly. And in return, he respects me enough to tell me like it is.
The current treatment is to double the meds, and to begin cardiac rehab. I need to understand how I can (safely) get my heart and body into the best shape possible. This is so I can continue to live as long as I can with my current physical status, and so I can get in physical shape to live through a heart transplant, when the time comes. Now, I am waiting…and preparing; preparing for a Beast of a storm that I now know for sure is coming for me – Hurricane Cheryl.
Emotionally, I still do not know how to digest such news. I have always leaned on denial, and anger. But those even elude me now. I had a moment of “why me” – which was really surprising and never even a “blip” on the radar before; as I still believe my life is no better, or significant, than anyone else’s life. I think I have run the gamut of possible emotions, and now I just don’t know how, or what, to feel. Maybe I shouldn’t even try to assign emotion to this situation yet, as these are some uncharted waters of my life. So I will just concentrate on the task at hand – getting stronger so I can fight the Beast that is coming.
Hurricane Shopping List:
Water
Batteries
Shit-kicking boots…