A while back, I had lunch with my old primary doctor, Dr. Joy. We hadn’t seen each other in years. As we caught up about life’s winding road, she looked at me with awe and said, “My God, Jackie. You were in a wheelchair.” I smiled and nodded along, all too aware that the enormity of my past is never far away.
In early June 2018, I was told to stop walking and that I had use a wheelchair. As if the AE and what it had done weren’t enough, the fear of me rattling around my blood clots added to it. My life became paralyzed.
Thank God my point of view from sitting within those wheels was very limited. On my second day at Mayo during that first eventful AE-trip, the doctor I saw about the clots told me I could get hoofing again. I’d never heard such wonderful news!
This is the only photograph that exists of me in a wheelchair. I wish footage existed of me jumping out of it to cut the blood draw line at Mayo, because that had to be entertaining. That and me snarking at Sean or Mom who had the great misfortune of pushing me those few weeks.
This photo is powerful, but it’s only part of the proof of AE’s destruction. There are no photographs of Sean holding me up to walk. No evidence of me being so weak that blankets or pillows on my bed trapped me. There’s nothing to see when AE began overtaking me and told me a man was in my home to kill me or when I couldn’t read a clock.
The blood clots were present in my body. Only to be detected with CT imaging. Just like the tangible fractures in my back were also present, but only discovered on that scan.
I can hold the piece of paper where I drew my infamous clock. The very visible documentation of my impaired brain.
But there’s just something about the picture of that wheelchair with me in it. The concrete evidence of how my body and mind were brutally attacked. I was wheeled onto Mayo Floor 8 East, at the most crucial and pivotal time of my life. The time where the Mayo Clinic neurologists would confirm whether I had AE and would deliver the news of my fate.
Just yesterday, I had a little time to think about that appointment and the girl in the photograph. Nearly five years later, I returned to the Neurology Department where I first sat, terrified and confused, in my wheelchair.
I made my way through the waiting room to go sit with my back to the wall and look out towards the middle of the room. I’m a true creature of habit. I didn’t consciously think about it until I sat down and looked ahead, and realized I was looking at the spot where the lady in the wheelchair had sat and was photographed.
There are four medical providers most crucial to my AE story and because of that they’re people I will dearly admire and be grateful towards for life. Stephanie Macdonald is the life-saving psychiatric nurse practitioner who saw me as the zebra I was and got me to Neurologist Dr. Dunnigan. Dr. Dunnigan, who clearly had a strong cup of morning coffee on May 23, 2018, and was ready for what I threw at him, immediately and correctly diagnosed me with AE. Mayo’s Dr. McKeon was the answer to our collective prayers. He conclusively told me that I had AE, he was quite sure I’d make a full recovery, and hopefully, I’d never have it again. And Mayo’s Dr. Zekeridou’s words were necessary and profound. She placed her hand on my knee and told me that I had done nothing wrong, nor did I do anything to deserve AE.
The lady in the wheelchair wanted so badly to believe Dr. Z’s absolution of guilt. She wanted so much to believe it was bad luck and not the self-induced life of a trial lawyer. But she was too hurt. And too full of grief.
The lady in the wheelchair had been stubborn and tough all her life (and skeptical, because law school plants that seed and lawyering makes it worse!). But she worried that maybe Dr. McKeon was getting it wrong. Maybe she couldn’t recover from what AE delivered. And maybe she’d never be herself again.
But because Dr. McKeon said it, that stubborn skeptic had to believe it. Even from the confines of her chair.
Every part of me wanted to tell him: You can’t know this! My life is over and there is no way back!! But I didn’t, because just being in Dr. McKeon’s presence told me that he’s rarely wrong and he wasn’t going to be wrong with me.
And for that first year of survival, when every ounce of my being told me that I didn’t have it in me to keep going and to recover, I went back to his words. And that sliver of hope inside of me remained convinced that he got it right with me.
I saw Dr. McKeon yesterday, for the first time since early-2019. Since then, I: met my goal of “stay alive for one year post-AE”; had a miracle AE baby; lived through a pandemic; grew out the hair I lost; regained my confidence; wrote my memoir, and completely rebuilt my life.
*For anyone wondering, I’m not having an AE relapse! Still good over here and in remission. I’ll spare you the details of why I was there, but it was part of my care plan for that trip. Again - no AE!*
Through the eyes of a writer, I now see the world through the lens of point of view, metaphor, and scenes, and hope to memorialize it in an interesting and maybe somewhat humorous way. (This is a nice break from seeing the world through the eyes of a lawyer where I often thought about how I could have gotten a divorcee a better deal, gotten someone less jail time, or how I could sue someone.) When I left my appointment with Dr. McKeon yesterday, I wondered what to make of it and how I could relate my experience in words.
I kept going back to the woman in the photograph. The physically and mentally impaired woman, sitting with her family, who didn’t really know what AE was or what it meant. How she sat with nothing more than grief, pain, and devastation. That woman was broken.
But that woman has vanished. And so has her wheelchair.
Even though yesterday, I was in the same physical place, life is vastly different now.
I took this picture with Dr. McKeon before I left. Just like the photographic evidence of my impairment in 2018 exists, so does the proof of my rebuilt life.
It took years, but yesterday, Dr. McKeon got to meet the real me. And the real me got to meet the man whose words helped propel me to the great place I now occupy. Us taking this picture together is the testimony that he understood AE and he understood me. And I’m so glad I believed him.
This photo also says that because of AE, I have the great pleasure to know Stephanie, Dr. Dunnigan, Dr. Zekeridou, and Dr. McKeon. And that because of them, those dog days of my life were limited.
With all that in mind, it felt like a really good day.
Remember to Just Keep Swimming, because there are always Better Days Ahead.
jackie
“And I don’t even need your love
But you treat me like a stranger and that feels so rough
No you didn’t have to stoop so low
Have your friends collect your records and then change your number
I guess that I don’t need that though
Now you’re just somebody that I used to know
“Somebody
(I used to know)
Somebody
(Now you’re just somebody that I used to know)” Somebody That I Used to Know by Gotye
__________
/ / The JM Stebbins blog is an autoimmune encephalitis blog from former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.
Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, faith, hope, and survival. / /