Living and growing through hard times

Learning to forgive yourself for the uncontrollable and unexpected

By Annie Cameron Lifestyle Editor

Everyone experiences hard times throughout their lives, and I can speak personally on this as I am currently experiencing one. I understand the difficulty and strength required to get through it without too much collateral damage, but throughout my experience, I have picked up a few tricks on how to make getting through it just a little easier.

Something that is so important to keep in mind is that you are just focusing on getting through. I have had countless people tell me to “stay positive”, “focus on the good” or “look on the bright side”, and the list goes on. Although these comments may seem kind, they can set unrealistic expectations. When someone tells you to “stay positive”, there is an implication that you are already thinking positively— but what if you are not? What if you have already lost all positivity and ability to simply “focus on the good”? Comments like these will make you doubt yourself; why are you so upset? Why is this hard time so hard?

Whether the hard times you experience last for a few days or a few years, you should not be expected to be happy or positive, you should be allowed to grieve and feel upset and sad and experience these emotions; not suppress them to fit some unrealistic standard.

Two years ago, on April 1 2021, my hard time started, and I am still waiting for it to end. A routine doctor’s appointment that day took a turn when my doctor found something unexpected. In the days following, I had an emergency brain MRI, emergency spinal tap, a series of blood work and several appointments with a neurologist that I had never even met before.

That whole week was a blur. Even just thinking back now, I remember the fear I felt was unlike anything I had experienced before. Through the testing, they found my immune system is attacking a few of my cranial nerves, specifically my twelfth one, causing weakness and paralysis on the left side of my body. My neurologist had never seen this before, and she brought my case to a board of the best specialists throughout New England, none of them having seen it either.

A few weeks later I started a series of steroid IV infusions, in an attempt to cure it.

After six weeks of this, I had no improvement and the side effects of the steroids were destroying me. They kept me up all night. I laugh now remembering how I made my mom watch the Hunger Games with me every single night of the first week on steroids, because it was the only thing providing me any comfort. After this treatment failed, we decided to try something else. I would start a series of treatments known as IVIG, or as I call them, infusions. IVIG stands for intravenous immune globulin, which is a product made up of human antibodies that is given to patients through a vein by IV. My first treatment began at 8 AM on July 26th, the day after my sixteenth birthday (good way to kick off a new year!).

At the start, I received treatment once a month, for five consecutive days each month, roughly 5-6 hours each day. At this time we decided to reevaluate in six months, and I was able to stay pretty positive.

Having that end date, knowing that by December I would be done, that kept me going and kept me optimistic enough that I could play along and act fine because the countdown had started. When my December appointment came, we noticed immense improvements, and my neurologist decided to take me off for a few months to observe what happened. A month and a half in, my symptoms came back worse than before, forcing me to start back up all over again. This took quite a toll on me, my heart still hurts thinking of that poor clueless version of myself who truly thought this would all be over after that December appointment. Once I started back up again in March of 2022, I altered my schedule so I would be receiving treatment once a month still, for three consecutive days and 10-12 hours each day. A few months later, after a follow up appointment in July of 2022, my doctor approved me for one more year, and I clung onto this for my life. I pushed myself through and forced myself to remain positive because in July of 2023, I would be done–right? After another follow up a few weeks ago, on March 16, I learned this might be some- thing chronic, something I could have to deal with forever. For now, my doctor has approved of another year minimum, with frequent brain MRI’s, and since my veins are so damaged from so many IV’s throughout the past two years, I am having surgery on April 3 to get a port placed. I will not lie, this appointment broke me. I had forced myself to stay strong, clinging to the idea that I would be done in July, and that I just had to hold out a little longer. All of the emotions I had suppressed so I could act “okay” or be “fine” could no longer be ignored. In the days following this appointment, I did something different; I allowed myself to feel my emotions and to grieve. Although I had not physically lost anyone, I had lost parts of myself. I grieved the time that has been stolen from me, the innocence I have lost, the opportunities I have missed. I felt for my younger self, the scared innocent girl at the start of it all, who forced herself to hide her anxiety and sadness so she would not burden others with it. I feel for the version of myself who had no idea what was coming, and I grieve for my future self who will always hang on to some of that anxiety about her health. I felt the emotions I had been ignoring for so long by trying to hang on to this “positive” outlook that I thought I needed. I have fought with myself so much throughout this journey, and I still have a hard time allowing myself to feel and let my guard down. I truly believe the way to get through a hard time is to embrace it, and allow yourself to grieve because you cannot heal until you allow yourself to feel. As I am now approaching another year of infusions and MRI’s, with surgery in just a few weeks, I am content. I have learned to embrace my hard time instead of ignoring it, and am now able to separate myself from my condition and focus on everything else in my life. Learning to feel your emotions, and rely on those around you for support will makeyouhardtimefarmorebearable.