I hope I don’t have ____, but I hope I have SOMETHING.
Yesterday, I received my genetic test results; it cost $250 and analyzed 26 genes related to auto-inflammatory diseases. In a big grey box it stated, “Negative result. No pathogenic sequence variants or deletions/duplications identified.” My heart sank, then lifted, then sank again and then broke into pieces. Every time I receive a negative test result, I go through the same wave of emotions. It’s not that I hope I have a terrible disease or some genetic mutation that I could potentially pass along to my children, but I’m hoping for an answer to this mysterious illness that has taken over my life. It’s a bittersweet feeling when my sixth hospitalization in the past few months results in no conclusive findings. I’m relieved that I wasn’t diagnosed with a serious illness, but I’m left with doubts about what the heck is going on with me and unanswered questions about my future. The hard part about many of these tests is that in fine print it says, “This negative test result does not eliminate the possibility that the individual’s condition has a genetic component. Clinical follow up of this individual and their family members may still be warranted.” So, essentially, I spent $250 to find out that science isn’t sure what I have (or don’t have).
I remember the first time I learned that doctors didn’t have the answer to everything. A similar experience to when you realize your parents aren’t superhumans, there’s a part of you that loses a little faith and another part of you that is humbled by all that science has discovered so far and even more appreciative to be alive now as opposed to 50 years ago.
When my brain tumor grew back just 6 months after having it surgically removed, my doctors presented me with two treatment options: surgery or radiation. Due to the aggressive nature of my tumor and how rare it was, my top-notch doctors at NYU told me that they just didn’t know which one I should choose. Frustrated and afraid of making the wrong choice, I went to four other hospitals including Johns Hopkins and the NIH for second, third and fourth opinions, each time, hoping for a clue as to which treatment would be best for me. Ultimately, the decision was made for me because as time went on, my tumor became inoperable and forced me to undergo radiation.
After the whole brain tumor fiasco, I was sure that the rest of my life would be smooth sailing. How could it not be? In my journey to diagnosis, I was faced with a torn esophagus, a collapsed lung, pnuemomediastinum, subcutaneous emphysema, severe neuralgia, and migraines. When my tumor grew back, I also experienced papilledema of both eyes and dysfunction of cranial nerves 9-12 (paralyzed right vocal cord, loss of taste on the back third of my tongue on the right side, inability to shrug my right shoulder, etc.). Everyone I spoke to reassured me that this would be my biggest obstacle in life and pointed out how lucky I was that I experienced all this adversity at a young age, when I could not only recover faster and more fully than someone who was older, but that I would bounce back a stronger woman and be able to help others who experience obstacles later in life.
Once I recovered from radiation, I faced a whole new set of issues. At 22 years of age, nobody informed me of the dangers of getting back on my feet too quickly. I had decided to take an anatomy and physiology class at community college to learn more about my body and to try my hand at science – a topic that had never come easily, but that sparked a newfound interest I never expected to hold. I remember walking up the stairs to my class, my backpack stuffed to the brim with textbooks and binders. I had this strange dull ache in my leg the past week or so, but didn’t think much of it until one morning when I woke up in excruciating pain. I called my mom from my bed, crying from the pain shooting down my leg, unable to walk. Long story short, I was diagnosed with sciatica – a painful condition I only recalled older people complaining of. No doctor I went to was sure of where my pain was actually coming from. After multiple MRIs and CT scans, the only findings were two minor disc bulges between L4/L5 and L5/S1 and a minor degree of degenerative disc disease. I struggled for the next 3-4 years with episodes of terrible pain and underwent numerous treatments including epidural injections, SI joint injections, physical therapy, acupuncture, chiropractic treatment, spinal decompression therapy, and a botox injection into my piriformis muscle. The theory was that I had jumped back into my regular routine too quickly and my back muscles weren’t prepared for the spike in activity, resulting in an inflammatory response that aggravated my sciatic nerve.
Throughout all of this, I unsurprisingly fell into a deep depression and was diagnosed with major depressive disorder and generalized anxiety disorder (among other things that I’ll probably share more about in another post). After receiving treatment, I learned to view my health struggles as positive experiences. They set me on a new career path in medicine, helped me realize how strong I really am, and also filtered the people in my life, leaving me with only those who supported me no matter what and got rid of those fair weather friends.
Surely now, after all that I had been through before even reaching the age of 30, I was REALLY facing a lifetime of health and happiness, right? Not quite! If you’ve been following my journey, you already know that I have been extremely sick since the beginning of April. Before you start feeling bad for me and questioning why bad things happen to good people (all of which I have already done), let me tell you that I am the happiest I have been in a long time. Of course, I would be happier if I had my health, but I am done putting off my happiness until _____ happens. Why must we hold off on our life until things are perfect or until we’ve checked off certain boxes? I so often hear my clients say that they “will be happy when…” What if those boxes never get checked? Why wait for happiness to find you when you can find it? Radical acceptance does not mean that you have to agree to the conditions you are currently facing, or that you must live the way you are living forever; rather, it means that you accept the way things are, especially those which you have no control over. It means you can live your life and be happy, despite the adversity you may be facing or boxes that have yet to be checked. Will I ever get a diagnosis? Maybe. But for now, that is not a predictor of my happiness.
