The World of Dlo

When I was first faced with the realization that I had lost more than half of my vision, it was obviously a devastating blow but in the grand scheme of
things, it was the least of my concerns. I had a disease that was now a part of me that was going to stay with me for the rest of my life. I still hadn’t
wrapped my head around that so dealing with my vision loss went on the back burner.

It was something that I just needed to get adjusted to and I did. At work, they were more than accommodating with adjusting my workspace with new monitors and adjusting the lights. I had to remind myself to slow down when I would walk because I tended to walk fast, especially around the office. Since my depth perception was off and I wouldn’t see obstacles that were on ground level I needed to be extra cautious. It did create a sense of anxiety whenever there were crowds, walking to the bus stops, and crossing busy streets.

Looking at me, no one can tell that I’m partially blind or that I have Secondary Adrenal Insufficiency. They are both invisible to the naked eye. I’ve never once defined myself as having a disability. I will never forget the first time the term “special needs” was used to describe me. It was meant to be a harmless joke, and everyone had a laugh. It continued to be a joke and I
continued to be the brunt of the joke at my expense. It was as if they saw me as weak so because I was different now, it was something to point out.

When I first started utilizing the VIA Para Trans transportation service, I remember feeling embarrassed when the vehicle would arrive at the house, the sound of the vehicle reversing would go off and alert the whole neighborhood they had arrived. Even when people found out I used VIA Para Trans it was almost a joke to them. They almost view it like what we used to say about the short bus when we were younger. I remember when I was in school and everyone including myself would make fun of the “short bus”. We all knew the type of people who used that bus. It wasn’t until I started using this service that I
learned that many individuals’ reasons for using this service weren’t always clear. They like me had challenges that weren’t obvious but invisible. You also
encounter those that have more obvious challenges. It humbles you and causes you to look inward and be grateful for your health and wellness and have
empathy for others.

We tend to put people in a box based on how we see them. I was with someone who couldn’t accept that after my brain tumor, I was no longer the same
physically. I truly believe they were embarrassed by me at times. I held myself back from asking for help because he felt it made him look bad. It was all
about how it made him feel and look. Never once considering my feelings or what would help me. I remember the day he told me he was leaving; he touched my arm and told me to move back home so someone could take care of me. I looked him in
the eye and told him hell no I’m not going anywhere. I’ll be just fine. He seriously thought I was going to be a lost cause because I was going to be alone. Oh, poor Ceci she’s helpless and is going to fall apart after I leave. The funny thing is that I felt a sense of empowerment after being alone. I could finally breathe, and it was literally all about me now was the time to do what I wanted and there was no holding me back. This only set the stage for what was to come.

Fast forward to the present day and I still feel empowered probably even more so. Even after moving back home and taking on being a caregiver to mom and dad. There were and probably still are those that may have viewed me as oh poor Ceci has no life and can’t drive, has health problems, and is just there taking care of her parents. Well, for one thing, I chose this on my own not fully understanding what I was getting myself into and many, many instances
questioning what the hell I was thinking and what the hell was I doing. Times of making mistakes, failing, getting frustrated, scared, feeling alone, doubting myself, etc. It’s been the most rewarding and challenging thing I’ve faced in my life. I’m freaking proud of myself for what I’ve been able to accomplish despite all the cards stacked against me, my health issues, and those things that people see as weaknesses. Don’t be fooled by what you think is weak, those are my superpowers, and I wouldn’t want it any other way. I have my life and I’m doing things behind the scenes that no one knows nor will know until I feel the need to share it. I’ve learned not to share my goals or dreams because people will find a way to shoot them down just to make themselves feel better.

I’m encouraged to continue in this season of my life because I have faith in my Lord, and I know that there is more He has in store for me than I can ever imagine.

Stay tuned!

At the end of January, both mom and I tested positive for COVID. This was the first time for both of us. I had been vaccinated and boosted but mom had not been vaccinated. Needless to say, I was more worried about her and how it was going to affect her. It was one of my worse nightmares to know that mom had contracted this and it was me who brought it home. I felt overwhelmed with guilt because I’m not sure where I contracted it. These past two years I have always done my best to be cautious, wore my mask, constantly used hand wipes and hand sanitizer, etc. While we were sick, I found myself still wearing gloves and a mask in my own house. I was also spraying Lysol and cleaning with bleach all over the place like I was in a fight for my life. I think what made it so much more challenging was that I couldn’t take care of myself or rest when I desperately needed to because I had to take care of mom, make meals, clean, do laundry, etc. I was literally coming apart, but I increased my steroid medication to avoid any adrenal crises and hospital visits. By the grace of God that worked. Mom’s Hospice nurse was able to come out and check on her so that was a comfort and we were able to avoid her going to the hospital too. It was three weeks before the symptoms started to taper off and now it’s just a few lingering symptoms that are still with mom.

During the time we were sick, the caregiver provider service could not send any caregivers to the house so even though I was getting better if mom was still sick, I was unable to go to work. The interesting thing is that it forced me to take a pause and brought some clarity to some decisions I was struggling to make. These past three months have been a whirlwind of juggling the aftermath of my father’s death which includes the legal paperwork, having to make the necessary notifications, sorting, packing, and storing his belongings, and most importantly, seeing how this was affecting mom. This was something I wasn’t prepared for. They were married 67 years and knew each other since grade school. I just couldn’t begin to imagine what she was thinking or feeling. So she’s struggling with being sick and grieving for dad. This was one thing I couldn’t fix much less understand. I had been working part-time for the past year and dad would be here with mom while I was at work, so I didn’t have to worry about her. Then out of the left field, I get hit with a curve ball and dad starts declining. It was two weeks before he passed that dad was placed in Hospice care and I started using the caregiver service for the time I was at work. It was Thanksgiving weekend when he passed and I continued to use the caregiver service while I continued to work. I just knew after the first of the year I was going to need to make some changes to my work schedule but honestly didn’t know how because it was going to hurt me financially. I just kept putting it off then we got COVID and then I knew I couldn’t put it off any longer. I had to set aside my worries and just take a leap of faith. It was no question, I needed to be here more for mom, and with her symptoms of COVID still lingering and other issues coming up, it was the right decision to make. It felt like part of a weight was lifted off my shoulders.

It was hard to see mom as sick as she was and it wasn’t that we hadn’t been down this road before with mom, but this was unfamiliar ground and different circumstances that we needed to consider. So I’m still unclear as to what is on the other side of this, but I do my best to press pause as needed.

Now it was time to jump back into some sense of normalcy after being on short-term disability for my brain surgeries. In my mind, I was just going to go back into my routine and pick up where I left off. Reality soon kicked me in the face and I found out it wasn’t going to be as easy as I thought. For one thing, it was a struggle to get my brain to remind me of how to do my job. It was the strangest thing to be sitting at my desk and just stare at the computer and stacks of paperwork and literally have my mind go blank. It wasn’t only mentally that it was tough but physically too. My eyesight was limited due to now being partially blind as a result of my optic nerves being moved during one of the surgeries. I was diagnosed with Traumatic Optic Nerve Neuropathy. I lost my peripheral vision and part of my central vision. My field of vision is along the bridge of my nose so it’s almost like I have one eye right in the middle. So that was a bit challenging to get used to and the light bothered my vision too so the lights above my workstation were taken out. I often had to wear sunglasses inside just because the lights were too bright indoors. I was grateful that my supervisors made adjustments to not only my workstation but also my computer monitors. They did everything they could to make me comfortable.

It didn’t take me long to find out that one of my coworkers who filled in for me while I was gone was bitter towards me because I was out for the amount of time I was and left her with all the work. She took no mercy on me when I came back and became increasingly more agitated and frustrated with me when my work performance wasn’t as she expected. She wasn’t the only one surprised because I was getting frustrated with myself. Needless to say, I was constantly dealing with the condescending remarks, conversations she would have with other coworkers about how incompetent I was, and the repeated reports she would make to the supervisors regarding my mistakes. Every single day for what seemed like months I would go home upset and stressed because of the hostile work environment. I couldn’t believe this was going on especially when I would get called into the “principal’s” office to explain myself. It’s not like they couldn’t see what was happening and what the motive was for her behavior, but it was a waste of time and drained me of all my confidence and energy. I always took pride in my work so I take offense when someone challenges me in that way when I know I hadn’t gone anything wrong. I owned up to my mistakes and took responsibility for my actions, but when someone challenges my work ethic and starts making up things, I take offense to that type of behavior.

I began to change my focus and was determined I wasn’t going to let this negativity get me down. I figured I would just continue to do my job the best way I knew how and not waste my time or energy on what she was doing and I would let karma take care of the rest. After the dust settled, I continued to work like a machine. It was more of a love-hate relationship. I loved my job but hated what it did to me mentally and physically. I could not turn it off at times and that was troublesome because I would still work when I was off and at times I would work on-call to assist with Spanish translations. Most importantly, I was also trying to please the person closest to me because it was like he could not handle me being sick or appearing weak. It felt like he would look down on me if I was laying down more than usual and made me feel guilty. I guess he was thinking the same thing I was that once the brain tumor was gone, everything would go back to the way it was before. Boy, were we both wrong! With my disease, I constantly battled chronic fatigue, muscle weakness, dizziness, and headaches. I am steroid dependent, so I need to take a certain dosage of oral steroids every 4 hours just to function. Everyone is different but at the time, I was taking anywhere between 50mg to 65mg of Hydrocortisone which is on the high side. This was the only way I could survive working full-time and functioning day to day. On the weekends, I was on death’s door trying to recover from the week only to repeat it again the following week. My life was constantly on a hamster wheel, and I did not know how to get off it or if I was going to die in it.

Call it being naïve, uneducated about my disease, careless, etc. I did not know there were resources available like support groups that I could reach out to. This is one of my regrets looking back at not educating myself enough about my disease at that time. The fact that my own Physicians did not know enough about my disease did not help either. I continued to work hard and constantly tried to prove to myself that I could keep working at that pace, but little did I know work was slowly killing me and causing additional medical issues. I was also trying to keep my relationship together. This was recipe for disaster that was about to unfold in ways I could not have imagined.

I often tell people who help me when I’m in a bind, my transportation service and Lyft drivers, grocery and prescription delivery drivers, and anybody who goes out of their way to assist me or my parents that they are my heroes of the day. Recently my dad had an appointment with his Podiatrist Dr. Wallace. I wanted to leave a message with Dr. Wallace prior to his appointment regarding my concerns about the shoes that my dad always wears. For one thing, they are way too big for him and my dad shuffles when he walks so that always scares me that he’s going to trip and fall as a result. They are sandals and they have no support for his feet, yet he insists on wearing them. My dad gets so attached to his clothes and shoes that he will hold onto them until they literally fall apart. I even took a picture of my dad wearing the shoes and sent the picture to my brother’s phone because he was taking my dad to his appointment and he could show Dr. Wallace the picture.

The morning of his appointment, Dr. Wallace called me right before she went into the room to see my dad. She called me to find out more about my concern and if there was anything else that she needed to address with him. I couldn’t believe my ears! Dr. Wallace actually took the time to call me and she assured me that she would discuss it with my dad. I was informed by my brother that during the appointment, Dr. Wallace told my dad that those shoes need to be thrown away and he needs a new pair of shoes that are at least a half size smaller and with more support. My brother even took him shoe shopping after the appointment to buy new shoes but was unsuccessful in finding some. No need to fear, Amazon Prime came to the rescue we ordered some new shoes and they arrived today! Yes, I immediately took the sandals and put them in a trash bag. I told my dad that I was going to throw them away somewhere else so he won’t try to dig them out of the trash!

Thank you to Dr. Wallace for being the hero of the day!