I’ve had something on my mind for a few months now. Someone commented to me at the KetoCon VIP dinner back in June, and it not only made me question myself but how I am as a friend and the ways having a chronic illness can affect my relationships.
A fellow epilepsy warrior commented,
“You just disappeared.”
I honestly did not know what to say at first, but I quickly replied with, “I’ve been unable to walk and have been facing mobility issues.” But, what I really wanted to say was, “You are also living with a chronic illness. Why are you so upset? You should understand that we must disappear in order to heal sometimes.”
After some time passed, I started to reflect on the statement again to understand why it made me feel the way it did, and why the person made the comment in the first place.
This person and I were inseparable last year and became friends quickly, mostly due to both have epilepsy and using the ketogenic diet to curb our seizures. We worked on projects together, helped each other network, and even joined forces to raise epilepsy awareness.
There were a few instances early on in our friendship where I felt we weren’t friends but merely colleagues. I was very honest with these feelings and raised concerns as they came along… all the while being reassured that we were friends. I shoved my intuition aside and continued on with the relationship, hoping things would improve as we fumbled our way through getting to know each other better.
I consistently felt as if I were a tool in her shed, called upon only when useful to a project or life problem. I never felt that I was ever truly let in and was kept at arm’s length. This was not what I wanted or what I was used to in a friendship. Although friendships come in many forms, I feel it should always be an equal exchange of energy, where both parties feel supported by the other. I never truly felt that in this relationship.
Then, my body cursed me. As if living with epilepsy wasn’t enough, in February 2019, my knee began to suddenly swell and retain fluid a few hours after waking. I did not remember injuring myself during a hike or while exercising, but something felt weird and a pocket of fluid appeared on my knee cap.
After two weeks of using the R.I.C.E. (rest, ice, compression, elevation) method, I went to the doctor to get it checked out. The doctor couldn’t find anything wrong but wanted to try acupuncture before sending me home. The needle went into my leg, and I immediately felt an aura. I panicked and begged my husband to call the doctor back into the room to remove the needle. (Months later, I still experience pain weekly in this acupuncture spot.)
Thankfully, the doctor came in and removed the needle before a seizure occurred. She told me to purchase Ginger capsules for pain and Turmeric with Black Pepper for inflammation. I followed up a week later, because my knee was still swollen, and was ordered to get an MRI.
The MRI came back CLEAR! There was no sign of any damage to my knee, but something was wrong… my knee wasn’t healing, and I was wheelchair
After a few months of physical therapy and rest, I was able to walk again – most days without a mobility aid. I still wasn’t able to fully bend or put too much pressure on my knee, but I knew I was doing my best to recoup and on a path to recovery.
Aside from my physical improvements, I wasn’t in the best place mentally. I felt isolated… I wasn’t able to drive our car since I couldn’t bend my leg properly to handle the clutch, nobody came to visit, and I rarely had anyone aside from family check-in to see how I was doing. I felt as if people thought I should just “shake it off” and keep moving, but it wasn’t that easy.
Then June rolled around, four months after my initial knee injury. I still wasn’t 100%, but I didn’t want to miss the KetoCon experience. I took a Lyft downtown to the Palmer Events Center, and made my way to the door, passing a long line of attendees to get my badge. As I entered the main room, I found myself getting lost in the rows of keto vendors, learning about new products, and even managed to see a speech or two on the main stage. But something felt off. I intended to walk the show with my friend, but I felt I was getting the cold shoulder.
I was confused. How could this person be upset with me? I hadn’t seen her in months, due to having mobility issues. I tried to shrug it off and continued to enjoy the event with others I’d met the previous year at KetoCon. But that evening, I was supposed to attend the KetoCon VIP dinner with this person and I was feeling a bit uneasy about how the evening might unfold.
The Death Blow
Walking back to the Palmer Events Center from a nearby hotel, I checked in with the person I’d be accompanying to the VIP dinner. Since I couldn’t drive, I was planning on taking a Lyft or shuttle to the VIP dinner, but my date said I could ride with her. (Yay!) I made my way to the parking garage entrance to meet her and another friend, and we headed to dinner.
After making our way inside, listening to the opening speech, and finding a place to sit, I finally had another chance to ask, “Are you sure there’s nothing wrong? You’ve been acting weird towards me all day.”
“You just disappeared.”
That was the only response I received. There was no follow up. She then turned to talk to the people beside her, and I tried my best to enjoy the event that I’d committed to attending.
After the event, a group of us took a photo together to commemorate the evening and made our way to the car. Even though I planned on taking a Lyft home, I walked her to her car because it was dark and said, “I’ll be traveling the month of July, but I’ll reach out when I return.”
She laughed and said, “Sure.” She got in her car and drove away, leaving me in a dimly lit parking lot to wait for my Lyft driver.
That was it… the death blow to our friendship. (R.I.P.)
What I’ve learned from this situation is that what you give isn’t always what you get.
I shouldn’t have expected this person to understand, just because they have epilepsy. Even though we are spoonies, our challenges are different, and we handle them differently.
Moving forward, I’m going to be MUCH more aware of who I let into my life, practice discernment, and work on letting go of expectations and judgement.