This is me. I'm at Mt. Sinai Hospital in Manhattan's Upper East Side. I'm frustrated because I can't find my friend Michael Fernandez. I have the room number, but it was a utility room. The receptionist/security guard was completely confused by my request. He thought I was in the wrong building, or perhaps had the wrong name. I showed him the texts. Then he got suspicious. "Do you actually know this person?" He asked me, skeptical. I was nervous and stumbled through my answer. "He's a friend of mine, a co-worker, really. He's here for IVIG treatments and I'd really like to see him." The receptionist asserted that I had to know the department number or the building, because that room did not exist. There was no 'F' wing in this hospital.
Now, let me preface this by explaining all the problems I had that day: it was snowing, I was having insomnia with a background migraine, feeling too sick to eat, and my prescription Axon Optics lenses were in the shop. I had a choice to wear my prescription untinted lenses, or a pair of non-prescription ones with the tint. I'm our main product tester, so I opted for a pair of our non-RX lenses in an upcoming frame. It was a tough choice, but I selected the Non-RX Axons. I'd rather have protection from hospital and subway fluorescent lights than be able to read. I am aware that it's a pathetic choice to be forced to make, but most people won't be so lucky. I'm fortunate enough to have access to therapeutic non-RX lenses when my normal ones are being repaired.
I sat at a table in the cafe area with my boyfriend, Joe. Joe supports me in my hectic lifestyle. He knows Axon Optics and its products almost as well as I do. Working for a high-tech venture startup is a big commitment, especially in the medical field. I had far too much to carry, so he's joined me on the 90-minute journey here today. We brought some new lightweight Cover-RX prototypes and a sweet new aviator frame with a base curve of 8 (more like a wraparound than eyeglasses). Michael's no stranger to our full line of products, and is a great product tester. These new Cover-RX may be lightweight enough for my most allodynic customers if they work. I brought a ton of magazines because anyone who has spent time in the hospital knows how boring it is. Not only for Michael, but for his wonderful RN mother and caretaker Alicia, and his brave young fiancee Venus. The families of people with Chronic Illness are as affected as the family members with the illness themselves. Family may not feel the same pain, but they stand alongside us in the emotional struggle. They may even feel guilt in their desire to empathize with the cruel nature of chronic illness.
I don't have a smartphone. I know I should get one. I want a tablet for work, but I know I couldn't resist using it on the train. That leads to trouble. A smartphone could double as a tablet and a phone in my pocket. I know how much it would help me, every time I'm lost or need to view a website. But I look around and everyone's buried in their devices. I know I will have to do it eventually, but I just can't bring myself to do it yet. Once you go forward, you can never go back.
On this particular day, I find myself punching tiny numbers on my tiny dumbphone, trying to get Facebook to load in my web browser. I need to contact Michael so I can find him. I finally log in – he repeats the location information, and says Venus will come down to get me. I was embarrassed that I couldn't find it myself. Am I seriously so frazzled that I can't solve this problem? Venus is probably rolling her eyes, riding down some elevator so close it's embarrassing. I can feel myself starting to blush in advance. I’m feeling really dumb. I need to be lead to a room? Now I’m flustered, but I wait. Nothing happens. I ask Michael if we can switch to texting.
We talk a little more and I realize that Michael isn't here. He had routine IVIG treatment scheduled at Mt. Sinai Hospital. He was going to be there for five days, at which time we'd meet up and I'd give him a care package, and we'd take some photos. We failed to take press photos the time he originally interviewed me because we both forgot due to migraines! On his way to Mt. Sinai, his condition suddenly worsened and they had to take him to the nearest hospital. He was in South Nassau Community Hospital, which is why the wing and room number did not exist here. He would not have made it all the way to Mt. Sinai; he would have died along the way.
Michael felt terrible about our missed meeting. He apologized to me profusely. He nearly died on the way to our failed meeting. Hours later, he was given a terminal diagnosis. He was still worried about disappointing me, of all things! I can't imagine how anyone could be mad at him in this situation. I spread out the magazines on a nearby table at the hospital cafe and left.
It is so difficult for suffers of chronic illnesses to make plans. Chronic Illness changes your life. It becomes a priority that can arise at any time, and cannot be ignored. I speak to people every day who have lost their jobs over their chronic illness. Even in America, with all our fair labor practices and medical leave acts, you can still lose your job if you can't perform. Michael and I both work from home offices, which minimizes the chance of illness interfering with work. Chronic Illness cannot be stopped, though, and so any plan must change for its unwavering grasp. All we can do is become more flexible, more strategic; we must change our personalities to become planners, if not so already. We must make room in our lives for the possibility of debilitating pain and just navigate around it. We must take every opportunity possible to achieve relief, and must be grateful for smooth plans and pain-free afternoons. We're grateful for the simplicity of a regular day. We battle for this simplest of rights, to exist in one’s own body. This is a fight most will experience eventually, but cannot comprehend from the outside. We cannot take for granted the peace of a day without pain. We regard every day as a precious gift. In some ways, we're living life to its fullest.
I can't help but feel like everyone with a chronic illness is on a perpetual mission, chasing health. They're hunting for relief with everything they've got. Just like I'm hunting for Michael, and he's hunting for me. I felt so accomplished when I finally arrived at Mount Sinai Hospital. Little did I know, the journey had only just begun. It feels like when you beat a level in the original Super Mario Brothers game for Nintendo. You've just defeated Bowser. You race to the next room to save Princess Toadstool, only to discover she isn't there. We are always in pursuit.
Thanks to Michael Fernandez, Venus Hercules, Alicia Fernandez, the kind staff at Mount Sinai Hospital, Joe, and Nintendo. Nintendo owns the copyright for the screenshot of Super Mario Brothers. I have used the image merely to illustrate a point.