“My journey is one of happiness, rapid changes, learning to navigate life’s challenges, enduring many physical and mental challenges, and persevering when I didn’t think it was possible. I hope my story can resonate with at least one person and help them through a similar life situation, health challenge, or change a potentially dark perspective of life that can so easily be brought about.
I will start my story in my early college years when I met my husband, Jeremy, at a college football game. After dating for a short period of time and talking very early on about what we expected from life, it was clear we had both been raised to save ourselves for marriage, which made our foundation and connection as a couple that much stronger. I had already been diagnosed with PCOS, which is notorious for causing infertility issues, around the time I graduated from college. So, Jeremy and I already knew after getting married we would adopt.
Ironically, I was working at the lab and needed to use my blood as a control for testosterone testing and this is where I self-diagnosed my PCOS based on the high levels and years of symptoms. A gynecologist would confirm the diagnosis a few months later. The gravity of not carrying my own child would and continues to weigh on me throughout life, but I knew there would be a higher meaning someday – one for which I would have to wait for. Seeing a pregnant woman and getting past the jealousy was something I would have to work through for many years. Who would have known this would have been the least of my struggles.
After dating for many years in college, throughout my Master’s program, and full-time work as a laboratory scientist, I moved on to work at a local medical school. The motivation was simple: to work a day shift position and get away from the doldrums that came with third shift work. During this time, I started to struggle with severe headaches and vision loss. I went to numerous appointments with my PCP, who at the time believed I had a post-viral flare after getting what appeared to be flu-like symptoms for a few weeks. After many months of the back and forth run around, I decided to drive myself to an ophthalmology appointment on campus. Needless to say, God must have been by my side that morning because people were honking left and right at me on a typically quiet time of the morning drive.
Once I reached the doctor’s office, I was taken through a series of vision tests. There was one in particular called a visual field where you are supposed to press a button every time you see a little orange dot. I stared into a white hole for 10 minutes per eye and saw nothing. Pushing away tears because I knew something was very wrong, I went into the exam room defeated. I had now worked long enough with physicians from various disciplines to know something was terribly not right. The doctor came in and was straight forward. I had three options: 1) brain tumor 2) meningitis or 3) pseudotumor. He offered to walk me to the nearby ER because I was declared legally blind and didn’t have my glasses with me because I had worn my contacts that day. I will never forget that moment, frozen in time as I made the few-minute walk to the ER with tears streaming down my face, fearing the impending doom that lay ahead. I called my mom who was at a follow-up appointment nearby because she had just had back surgery. She would be there along with my dad as soon as possible.
Upon arriving at the hospital, I began answering the barrage of routine medical questions. The medical team examined the records sent over from the ophthalmologist and the testing began. The ER doctor was one of my closest friends and a colleague from the medical school where I worked. He was a quiet man who never showed his emotions, but that day I sensed his fear. I would endure many brain scans, a spinal tap, and a lot of waiting. He would speak quietly to my mother about the exceptional care the cancer hospital offered if this was a malignant tumor. A few hours later, I was diagnosed with pseudotumor.
Clearly I knew pseudo meant false, but never in all my years of training had I heard of this. Essentially, the area of my brain called the ventricles that drain and recycle your spinal fluid daily had stopped working and my brain pressure was very high. The confirmatory spinal tap showed a pressure of 39 (normal is less than 20) and I fell into the gray zone of either 1) trying medication or 2) trying medication and getting immediate brain surgery with a VP shunt. After meeting with a pseudotumor specialist, it was decided I would try the medication route after a week stay so I could get a bilateral optic nerve fenestration. In essence, the doctor’s worked for days to get the pressure down in my head so the swelling in my optic nerves would recede enough to operate. I was able to receive the operation where they remove your eye from the socket and place a series of holes in the optic nerve where fluid can flow out freely instead of getting trapped, resulting in blindness. Finally a week later, I was released and no longer needed my mom to wipe away bloody tears or feed me by hand because my eyes were bandaged to protect them from further damage as they healed.
Fast forward from the bilateral optic nerve fenestration that restored my vision, three years of hellacious medications at 800 total per month to keep my pressure under control and finally a VP shunt in 2012. I’ll never forget crying in the OR because the night before shunt surgery my Granny and Pap came to me in a dream and said, ‘Honey, we are waiting for you.’ I was so scared, I even put a check with my entire checking amount under my mom’s pillow the night before surgery because I believed very strongly I wouldn’t survive. On the morning of surgery, my doctor, a gentle giant, prayed with me by bedside and reassured me he worked through God’s hands. I woke up a changed person and realized anything medical that ever happened from that moment forward could never challenge me the way this experience had. You have one brain and one option. You either recover or you die. I now faced a 60% shunt failure in the first year, but thankfully this would not happen.
Subsequently, eight weeks into recovery, I was able to complete my Master’s degree in Healthcare Management, my four-year presidency for a non-profit laboratory organization, and return to work at the medical school. There were a lot of quirks to the system as short term memory issues made me remap the way I functioned and sticky notes became my best friend. I left the medical school after 6 years when an interim director stated I did a wonderful job ‘when I was at work.’ Needless to say, the time she was referring to was FMLA protected and I could have pursued legal action. Instead, I wrote a resignation letter that very day and left an otherwise toxic environment that didn’t deserve me.
I would finish my working career with a part-time job in domestic violence and a grant funded project where I aided social workers who helped drug-addicted mothers try to regain control of their addiction and subsequently stabilize their babies health once born. During this time, I would endure two last major surgeries where a plastic surgeon decompressed various nerves, removed muscle and tissue, performed a septoplasty for contact points, and padded other parts of my neck and face to stop pressure points that trigger migraines. At the point prior to this surgery, I was experiencing 24/7 migraines on the pain scale of 7-9 out of 10. They were both gruesome, but especially the five-hour operation on my face. In the end, though, my migraines decreased to three times a week and fell to a 5-6 out of 10 on the pain scale. Life for me was looking up.
When I left my career behind, I knew it was time to become a mom. Jeremy and I finally got married on my parent’s anniversary date. We knew we wanted a small wedding to have it be about the marriage, rather than the event. It was a beautiful day with very few hiccups and I will never forget my dad shaking as we walked down the aisle because we were both so nervous. At this point, I would have never known how important the father-daughter dance would become and how blessed I was to have this moment that so many women miss out on in life. We would dance to ‘Butterfly Kisses,’ which had always been our song. The day ended and my husband and I took a quiet week off at Hocking Hills in a small cabin. Both the wedding and the honeymoon were highlights in my life I will never forget, and honestly one of the rare moments where I felt not only like a normal person, but stable, healthy, and on the right path moving forward.
We started the adoption process from the state waiting list soon after the wedding. The state waiting program is for older children who are less likely to get adopted and more likely to come with all types of issues created by a tragic past they had been exposed to. We wanted siblings from the beginning. After many disappointments, I vaguely remember applying for two brothers I saw in a flyer. A few months later, while shopping with my mom in Meijer, my caseworker called and said, ‘Would you like to learn more?’ Of course I would, as I logged this in the back of my mind. Per usual, I showed my parents the picture and remember my dad saying they looked like good boys. We had many of these instances where a county stated things appeared good in terms of an appropriate match and the conversation versus the reality of what was going on behind the scenes was much more than we as inexperienced parents could handle. Finally, a call took place with a small county in Ohio and the facts actually matched the presentation. We were feeling hopeful.
Sadly, life took a sudden turn on January 13, 2020. Unfortunately, a few months prior to this day, my brother’s wife of 15 years lost an 18-month battle with cancer. Needless to say, our emotions were raw. My dad called my mom on our way home from her post-operative doctor’s appointment. His speech was slurred, his cognition inconsistent, etc. We knew he was having a stroke. Without going into too much detail for the sake of reliving the trauma, he received TPA within the appropriate timeframe for a massive stroke. This would cause subsequent bleeds, brief stays between rehab and hospitals, and positional seizures every time he stood. We did have moments of hope between these brief stays where we were able to cherish the special time we had with my dad, only to be scarred by witnessing the recurrent seizures, mood changes and the frustrations he felt as he battled for his life. Simple things like a Subway sub, a post anesthesia conversation where his ornery demeanor got the best of us in terms of endless laughter (out of character for him), or even helping him shave (because he had always been so meticulous about how he presented himself) became the small victories and the memories I didn’t know at the time would mean so much later on.
On February 14, 2020, life changed forever. We received a call about a change in behavior with my dad. We had seen this developing over time and he would call us stating he wanted to come home. He wanted to sit in his chair with his girls (4 chihuahuas) and go back to work. Unfortunately, his post-stroke brain complications not only caused a rather dramatic change in personality, but an unfair and unrealistic reality he longed for that could no longer exist. When we arrived at the facility, we knew something was terribly wrong because he had been frantically calling our phones. Eventually the police were dispatched to the rehab facility because he was being aggressive. This was not my dad.
After waiting in the lobby for my dad to calm down from believing people were going to kill him, he had a massive seizure and was transferred to the closest ER. There, his scan was stable. We were emotionally exhausted from the back and forth nature of his care and many failed attempts to advocate for him with no results. I decided to fiercely advocate for him with a very kind neurologist who actually listened and admitted him for further observation. Time would pass slowly that night and after hours of waiting, an admission physician came in. Needless to say within minutes of his jovial conversation about how he broke out of the rehab facility, he stopped breathing and coded right in front of us. No more dad, no more rock; life as we knew it would never be the same again.
Now here I am, 10 years post shunt surgery and barely one year out from my dad’s passing. Unfortunately, all of the years of medications have reeked havoc on my body as I battle POTS, IBD, and numerous other issues. I refuse to let the randomness of a sudden cavernous hemangioma in my face deter me or a bilateral knee issue that arose from my inflammatory bowel slow me down. The smaller, more ‘normal’ things that happen to everyone compile the already existing, undefined autoimmune inflammatory issues I have and it’s oddly where I get stuck at times. Through it all, I have learned to no longer see myself as abnormal or justify to others I am good enough. I am good enough and I am strong enough. I am a fighter, an advocate, a mother, a daughter, a wife, a friend, and many other roles where I know I pour my heart and soul into being successful.
To bring things full circle, I am currently sitting in a new home where my mom has moved in and I am seeing those two boys who my dad last saw before he passed now as my adopted sons. My oldest, who changed his middle name to my father’s first and last in his memory, has the same loud mouth I had when I was little and the same level of orneriness of my brother. My youngest has a heart of gold and is emotional, just as I was when I was younger. Through all of this, I’ve learned life has a way of taking and giving. Every day is a challenge with chronic illness, mourning, being a mother to two preteens and being blessed by having my mother, husband, brother, family and friends by my side.
In closing, life has thrown me some very strong curve balls. My medical background and experiences had already taught me early on the humility and appreciation for the fragility of life. Life itself has taught me to never plan for the known, instead plan for the unknown. Cherish each moment, love selflessly and think outside of your comfort zone or expectations. I know I have, and I refuse to let life’s battles trample my hopes, dreams, and relationships with those I hold both dear in my heart and those who are physically present. Love effortlessly, endlessly, and honestly so when your time comes, you will know without a doubt your unique journey will lead to your ultimate salvation.”
This story was submitted to Love What Matters by Stacy Wenner of Ohio. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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