Existing To Survive

 

The stories I could tell, the pain I have felt, the things I have lost living with Lupus; I suppose we shouldn’t call it living then, but more like existing, yes that’s it, that’s the word I’m looking for…existing. So, when you feel as if you’re only existing what do you do? How do you cope? How do you make it from day to day without throwing in the towel? The best way I can tell you how is just by getting up each day and try, you have to try even when you feel like you have no reason to, because believe me when I say that even when you feel that way, there is always a reason. Though you may not see it today, tomorrow, or even a year down the line but know and hold onto the fact that there is always a reason to go on.  

I was always known as the sick kid in my family and among my friends as early as three years old when I was hospitalized and diagnosed with asthma, growing up with that was not easy but I had no idea that things could get worse. Coming into my teens I never felt as healthy as my friends and I found that to be disturbing as it always made me feel different because I couldn’t keep up with everyone else as I know I should have been. There was always some sort of complaint and regular visits to my doctor’s office, sometimes the blame fell on me that I was either lazy, I’m making it up and even being diagnosed with psychosomatic illness. Now, if you don’t know what that is let me break it down for you, psychosomatic illness is a disease that involves both mind and body meaning it can be a situation in which the mind influences the body to create or complicate an illness. Simply put the doctor believed it was all in my mind and that I was causing whatever harm I was experiencing on myself, I cannot begin to explain how much of a blow was dealt to me hearing that if my own doctor didn’t believe my symptoms then who would?

Somehow, I just couldn’t accept that this was mental and it wasn’t until another doctor of mine sent me in for further testing that I would find some relief and answers that I had been looking for. However, the answer came with even more questions than ever, and my world felt like it was at a standstill. At age fifteen you’re supposed to be out enjoying your teenage years, learning, exploring, and just having fun but how could I do that now after being weighed down with the diagnosis of Lupus? I have never heard this word before so how could I be expected to understand what it was, I know the road that lay ahead of me would be a grueling and long one but my silver lining came in the support of a few dedicated family members and friends who have never strayed from the task at hand of being there for me when I need them most up until this day.

What came next felt like a whirlwind, I had symptoms that I found so hard to explain and recall that I had to make lists of because I couldn’t keep track of or remember them all. Fatigue, tremors, weakness, body pain, migraines, nerve damage, brain fog, hair loss, you name it I’ve had it. I missed so many days of school and I missed out on field trips that only added to the mounting depression I had when my friends would walk me through the many stories of how it went and how much fun they had. Out-of-town trips to see my rheumatologist were the worst as each time I had to go back I knew my prescriptions would just continue to grow, not to mention the fact that I had to do so many blood draws before I could even go. I was confused, in pain, depressed, and stressed which only added as triggers to the disease. Safe to say it has not been an easy journey but still I am here because I have chosen not to give up and continue on with the war that has been waged on me.

I have spent countless hours researching Lupus and what exactly it means for me, at first there was not much data available but in recent years information has been extremely accessible and abundant. I have learnt so much that I now can provide support and information to those who are having to go through this like I did at an early age. Proud and fulfilled does not begin to explain the feeling I receive when I can offer a word of advice, support, or encouragement to someone who is in need of it in order to make it through to the next day. I know how much a small word means from someone to someone who has similar experiences because initially, I had no one to turn to who was feeling or going through what I was. Thankfully now I have a host of love and support from friends with Lupus and similar invisible diseases. I now see the purpose of being given Lupus, I had to learn how to manage this package I was given to the best of my ability.

In years past I continued to define myself by what I am not able to do and bit by bit it destroyed me. I had to go back to the drawing board and learn that I am not Lupus, it’s just a disease I have but it doesn’t have me. I could spend the rest of my days squandering in self-pity, hate, and resentment but where will that ever get me honestly. It’s not a path that I want to walk and no one should ever have to either. So, instead of slowly dying from the negativity and allowing the darkness of it to engulf me I chose to live in the positivity and I allowed that to be my legacy. I have found that acceptance is such an important key to unlocking and understanding that a diagnosis is not the end and it should never define a person, it’s just a piece of the puzzle that is your life.

It’s been fifteen years and I have experienced way more than I ever should living with Lupus. I’ve suffered loss after loss and pain-filled, unexpected days that have been absolute nightmares. I have been robbed of experiences and future prospects that I will never have and that’s one of the most painful things a human being should never have to go through. When all is said and done, I have accepted that I have to live with Lupus for the rest of my life and I have no control over that. What I do have control of is my outlook and reaction towards it, I can choose to let the disease break me or stand up and fight. I have chosen to do the latter and making the choice alone shows me that I am indeed stronger and I have no intention to let it take me out at least not easily or willingly.

 

 

Maybe The World Needed A Pandemic

 

It feels just like yesterday, probably because I remember it so clearly that it almost makes it unbelievable, the last day I was actually out among the masses before this pandemic hit. I was spending some time with a girlfriend and getting ready to head home when the news was heard around the world, I thought that it would probably be one of those things that go away before people even get the full understanding of what it actually was. Little did I know that I was so wrong and it would be something to go down in the history books, something this world would never forget. The following day word of Covid-19 was on the lips of the world, even countries that had no cases were talking about it, safety procedures were being put into place and everyone was researching what this virus actually was, still, panic was at an all-time low and the world was keenly keeping watch of what would come next.        

Before we even knew it or had the time to prepare Covid-19 was being spread like wildfire, countries were being flooded with cases, the death toll began rising, lockdowns were in effect as well as curfews, quarantines, and safety protocols that ensured not a face would be seen without a mask or hands touch without proper sanitization first, it was either that or face the penalty that new rules were now putting into place.

Now this is where I began to panic and was nose deep into research trying my very best to understand exactly what the Coronavirus was, what it does, possible treatments, and my panic mainly was due to the fact that if I caught Covid it could very well prove fatal to me because here I was in the body of a person living with a compromised immune system. Living with Lupus for the past sixteen years and Asthma for at least twenty-eight years, that’s a double whammy for Covid, I won’t lie I was and still am living in complete fear and take every precaution necessary to protect myself and my family.

In record time an entire year had passed marking a full anniversary of the last time I was actually outside among the public and among friends in March 2020 to March 2021. Though frustrating both mentally, emotionally, and financially I know it’s the best thing I can do to stay alive, although a lot of the times during these past months I haven’t even really felt alive and not to sound selfish here because I am beyond grateful to still be here knowing that Covid has robbed so many of so much but at the end of the day I am only human and these feelings will arise.

Our existence has been diminished and our way of living has made a complete one-eighty, however with this pandemic humanity’s true nature has been unveiled and revelations brought to light. Things we once deemed as necessities have now become of little to no value to us and though we have learnt the hard way, regardless we have learnt and what I have personally learnt is appreciation. I have grown to appreciate the small things more, matter of fact I have come to understand that they aren’t actually small things at all but just things that we have placed into a small box that somehow belittles and underappreciates them.

I have been spending more time with my mother, I’ve been granted more access to her. Learning from her, laughing with her, and being in her presence during this time has replaced the importance and urgency of small things like events, trips, and plans. I have also spent more time talking with and learning from my dad through voice and video calls, though we are not even in the same country we are closer now than we’ve ever been and this pandemic has been the cause of that, we are indeed socially distant but mentally we have gotten closer as the days go by. Nothing in this world has more value than that and in an optimistic light I see it all now as a blessing, maybe the world needed Covid, maybe we needed Covid.

How often have you seen life stand still? Us being forced to stay home from work, from events, from people has started a chain reaction to healing and rest, a chain reaction that is pushing us to spend time with those close to us and ourselves to re-learn about each other, appreciate each other, and be grateful for the time we have. I have been spending a lot of time with myself and learning about what actually makes me tick, the results have been astounding. I used to not be able to go a week without seeing people who I thought held great value to my life and now after months of not seeing them and actually seeing myself and loving myself for who I am, I don’t even bat an eye regarding ever seeing them again and that’s ok, I wouldn’t exactly call it selfish or cruel, it’s really just prioritization and learning.

At times I do suffer from a bit of survivor’s remorse knowing so many have passed from Covid yet here I am still alive and well, so to speak. So, what really makes me so special that they’re gone and I’m not? I think we all have felt this way from time to time and it somehow makes us feel like outsiders to this virus, even outsiders to the loved ones left behind. How can we even begin to understand how best to console, or try to help them feel better knowing their loved ones are gone and they never even had the chance to hold their hands for the last time or utter a final farewell personally. That in and of itself is worse than the virus, they have to live with that as long as they’re here and I don’t think it’s ever something they can go a day without thinking about.

I honestly don’t know what has kept me going this long, my mental health is far better and stronger than I ever believed it to be. I think my passion for writing has also been a God-send, I feel like my pages are a kind of therapy for me, and being able to express it all and let it go with a pen is nothing short of a miracle. Many times, the thought comes to me that maybe my life has a purpose that I haven’t quite fulfilled yet, a purpose that I still don’t quite know and understand. I don’t believe we ever truly leave until we get it done, my belief is that there is a higher power and until you do what you have been put here to do then you can never leave until then.

Covid-19 has been an unexpected burden thrust upon our world and in our lives, though vaccines are now being developed, tested, and working we still wonder if it’s enough. How many of us miss the normalcy of our routines, going to work, the beach, a wedding even or simply shaking a stranger’s hand without worry of being infected or sanitizing immediately after. Masks, don’t get me started on masks, how I miss not wearing one, and the freedom of not having to worry about always having one on hand.

However, I have seen unbelievable tasks from mankind that have renewed my faith in humanity. I have seen so many give and sacrifice to help out a brother in need during this time, it has taught me that no matter how bad things may get or how lonely we may feel, our fellow men will always come through for us. Sometimes it takes a disaster or a pandemic in this case to wake us up and see that we need help and it begins with just one, it’s a domino effect that will eventually touch each one involved.

Maybe the world needed this pandemic and I say that with sadness because it has taken the loss of so many lives and a horrible virus to actually wake us up, force us to open our eyes, and see what is happening to the world around us. To bring us back home and be grateful for what we have and who we have, to reach out and help anyone and everyone that we have the possibility and means to. I wonder if when and if we ever return to our normal way of living if we will take the lessons that we have learnt from this pandemic forward. Will we revert to our ways before all this began or will we take all that we have learnt with us? Only time will tell and I do nothing each day but hope for the Covid-19 era to end soon, to disappear from our world as quickly as it settled here. It has left its mark upon us like the scarlet letter and each one of us will come out of this forever scarred in some way or another. All we can do is wait now, await a hug, a touch, a kiss, await the freedom to take a breath unmasked.