I recently returned to the place where I spent 30 years of my career. I had not been there for six years, but people still knew who I was – YAY!
Unfortunately, those people also wanted to know what was going on in my life. I could have just said – Oh, I do a lot of volunteer work. But that wouldn’t be sincere, and I also want to be open with people so that they know that you can still have a life and be optimistic when you have a chronic disease. So I have adopted the RUST approach to updating friends, family and colleagues: Remain Upbeat, Simple and True.
So for example, when I told people that I had heart failure, I had to immediately explain in simple, easy to understand terms what that means. Why – because it is an illogical term that doesn’t really mean what it says – because if my heart failed I would probably be dead rather than standing in front of someone and speaking. So my explanation was: “Heart failure for me basically means that my heart pumps at about a third of the rate of what your heart pumps. But that is okay because my heart and I have always been overachievers!” Usually this got a chuckle, and I think people realized that while my health was no longer outstanding, my outlook was upbeat and my commitment to manage the condition to the best of my ability was clear.
I am not the only one who uses this technique to make something intimidating seem almost normal. I mentioned in a previous post that I had worn a holter monitor in the summer because my blood pressure monitor continually detected extra heart beats. When I went to see the electrophysiologist to get a briefing on what the holter monitor had revealed, the nurse brought in a device that the doctor could use to get a current reading on my heartbeats. The device is called a "pacemaker interrogator".
I don't know about you - but my chronic illness support group and I think that this is a really intimidating term. It brings to mind images of the Spanish Inquisition. My doctor broke the ice very easily by picking up the probe for the monitor and saying "I'm just going to say hello to your device." Then he placed the probe over the pacemaker and a graph of my heartbeats as they happened started to appear on the screen. This was a much more relaxed way to proceed talking about, and visually experiencing, a very serious subject.
Many of my friends know that keeping my blood pressure in an acceptable range is a challenge. Unlike most heart patients, my problem is not high blood pressure. I have really low blood pressure. I think the reason for this is because my blood pressure was low most of my life. But now I am on medication that while helping my heart, also has the added facet of regulating blood pressure downward. Add to this the facts that I am physically active (which can help to lower blood pressure), and I can’t eat a lot of salt (which can cause blood pressure to go up), and the blood pressure readings can be at a record-breaking low.
So when my friends ask me how low my blood pressure can be, I may say something like that information is only available under subpoena. But if the numbers do happen to come out in conversation, I usually qualify it with a statement like: I’m just the energy efficient version of a heart failure patient. Again, that usually gets a chuckle and helps people to realize that no matter how low the blood pressure is, I’m operating with enough energy to make jokes.
When I am at a restaurant with friends and family, well most of them have been around me as I spar with heart failure. They know that I have some very strict and unconventional diet guidelines. I mean, how many people do you know who have received the following nutritional guidance: You can only eat either broccoli or a peach once a week – but not both. Unless it is a canned peach and then you can have it. This sounds really odd, but these produce items have more potassium then say cauliflower or apples so I have to be careful how much I eat of anything that is in the medium or high potassium category.
To make life easier in restaurants, I usually study the list of fruits and vegetables on the low potassium list. Then I am often required to barter with the wait staff: No, I can’t do broccoli, but do you have green beans? Or a spinach salad is out, but do you have iceberg lettuce? The wait staff is usually extremely helpful, and I occasionally run across someone who has their own chronic illness, or has a relative with a chronic illness – so they know that dietary considerations are medically necessary and not just because I am finnicky.
But for those friends who are eating with me for the first time, I make a joke out of it. I tell them that my doctors perform blood tests periodically to gauge the level of sodium, potassium, magnesium and other things in my bloodstream. Then I say something like: “All of the items that they test for are on the periodic table that we learned about in chemistry. So I just tell people that I’m on this new diet called the periodic table diet.” (I mean who ever thought that the teenager who got kicked out of chemistry class for rowdy behavior would ever be making chemistry jokes?)
Then there is this lovely fashion accessory that is positioned right in my collarbone area – the heart device known as the cardiac resynchronization therapy device. It is basically my pacemaker, the part that makes sure my heart rate stays at the rate of about 60 beats per minute. It also can serve as a defibrillator, in case my heart ever goes into cardiac arrest. Being that I am a lawyer, I have made it my goal to avoid any kind of arrest, especially those of th cardiac type.
Now most people do not feel comfortable knowing that level of detail about something that might only be needed if I am on the verge of death. So it is easier to refer to let them know that this computer mouse-like thing is what keeps me marching along like the Energizer Bunny.
But I have also come up with another reference that I think I equally persuasive. I can refer to the device as being like my internal back-up generator – only necessary if my heart experiences a storm so intense that my electricity cuts off. This little back-up generator can kick right in and keep my heart pumping along.
Of course, one of the hardest things to initially manage was the pity of people who knew how active I used to be – and how much I loved my job. I can tell that while they feel sorry for me, they are uncomfortable with expressing their feelings because I think they are afraid I might burst into tears or express bitter thoughts.
So this is when humor comes in really handy. I tell them that although I did not come to this conclusion quickly, after a lot of thought and time with a therapist, I realized that there truly is a silver lining that I can mine for treasures.
So to break the ice, and inspire a few chuckles, here is what I tell my friends and colleagues about my six year long journey with heart failure. Yes, it sucks to live with heart failure, but in many ways God did me a favor. You see, I was never going to stop burning the candle at both ends and working myself into the ground without a catastrophic event. I sometimes chat with God that if he wanted to get my attention, a burning bush would have sufficed. But who am I kidding - I would have just looked for a fire extinguisher and put it out.
So you may think of rust as a process that corrodes, erodes or tarnishes something. You might also think of heart failure as a process that is eroding my emotional and physical health. But I see my version of RUST, and the ensuing explanation of my heart failure condition, as something that builds up my confidence, and that makes me grateful for all that God has given me. In turn I am better able to reassure those who become speechless or uncomfortable because they not only have sympathy for me, but fear that something similar may happen to them. Life is good no matter what curves are thrown your way, as RUST helps me reveal to all of you.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.