Click play to listen to a deep dive podcast – like overview of this story. This summary is AI generated, and some elements may be not be accurate.–>
A Different Kind of Guess Who
If I were a character in the Guess Who game, I don’t think it would take long before someone figured me out. There’s my unique name, my glasses, and the collage of red, brown, and gray in my hair. Now, there’s also the cane I often use because of MS. I stand out. I’d be found in three guesses or less.
My dad, who is also a very unique individual, is probably where I got some of these characteristics, not his beard, of course. He’s incredibly talented, memorable, and has a unique look that people usually remember after meeting him just once. I feel like I’ve inherited some of that.
There are a lot of positives to being a memorable person. I assume people remember me because of how I look, or my name, more than the conversations we had. Sometimes, I don’t remember them as well, which can be a problem, but I have managed to find my way through that for the most part.
MS has not helped the memory aspect of this, but it has given me an ability to make sense of forgetfulness. It’s not because it doesn’t matter to me. It matters a lot. It’s because my brain is fighting a daily battle.
The Uniqueness of Being a Giraffe
This leads me to the other thought I have about uniqueness: Does being a giraffe count? I think it does.
Truthfully, it is exhausting to be medically unique. I have worked professionally with doctors in a few different settings, and I honestly believe the ones I have met are doing their best and want to be helpful. However, the “horse narrative” just runs too deep.
They assume it must be “easy” or must be this one thing they have seen or a common problem. That is probably why until last year, I had never heard the diagnosis “BPPV.” Yet, somehow, that seems to be the go-to for what doctors tell me about my dizziness I am experiencing.
Multiple times, now, I have gone to the doctor and been told it may be the crystals in my ears. It is so common, they have the handout of the exercises printed out in the exam rooms.
It is possible that this is also happening, however, I don’t think so. And, more importantly, I don’t want this “quick solution” to limit the investigation into the more complicated nature of what I am experiencing.
Meanwhile, I’m here trying not to pass out every day, and figuring out how to manage my symptoms with Dr. G. Who, to be honest, can’t really do anything. She just validates that my experience is common for people with my condition and names the symptoms I am feeling.
While it is validating, it is not comforting or official to get all of these words: allodynia, neurological misinterpretation, nervous system dysregulation, neuropathy, Orthostatic Hypotension (POTS), and syncope.
My new PCP, who I think is much more validating than my last one, more or less shrugged when I told her my symptoms. While Dr. G. told me all the things that my doctor would likely do with the data (TONS of wild BP and pulse numbers.)
However, she looked at me with sad eyes, and told me I really need to see a cardiologist. She seemed a little afraid of the giraffe that was sitting in front of her. I think she wanted to help me, and she hadn’t seen something like this before. I’m complicated.
Feeling frustrated with having to wait until November, I asked Dr. G. if I was unique in my experiences.
Nope, apparently not.
“Many people with your condition often go undiagnosed for years because their symptoms are often dismissed as anxiety, stress, or other conditions. However, your symptoms are a very specific and clear sign of a neurological and circulatory issue.”
Finding Jewels in the Ash
Being a giraffe is hard. It’s expensive, and it is exhausting. I can’t bring myself to write the sentence “I wish I was a horse.”
I don’t think I do.
I’m not sure I’ve ever been a horse. The idea of being a horse sounds easy, but I’m not sure it actually would be. Thoughts pop in my head about how, if I was a horse, I wouldn’t have to have all this trouble. That may be true, or it may not. What I know for sure is you can’t build resilience by walking a leveled-out paved path.
This is similar to my feeling that I am not “grateful” for MS… yet.
Maybe one day I will embrace and appreciate being a giraffe more than just buying and decorating my house with cute giraffe figurines. I’m not there right now. It’s expensive, it hurts, it makes me sad.
However, there are people I have met that I wouldn’t have had the opportunity to meet otherwise. I am so grateful for the relationship, and not yet for the struggle.
The skills that I have earned have not been given to me on an easy road, and that is because they can’t be given that way. My ability to connect with my clients, especially those that feel like they don’t fit in or they are misunderstood, is not in spite of my struggles—it’s actually because of them.
It’s interesting how I can see the jewels and the ash almost more clearly with the lens of uniqueness. Being unique in what one can provide is special. I notice this because I seem to find doctors who can look at or treat certain aspects of what I am experiencing, but none who seem to be there for all of it. What if there was someone who could look at all of it?
I’m so tired of seeing doctors shrug, or say it’s not their specialty, or look at me with sad eyes and tell me they are not sure what to do. “It’s not cancer,” but I’m struggling.
There’s not a medical giraffe expert, that I have found yet, but I am certainly on the look out.
Embracing the “Weird”
My dad has this saying that there is only one, sometimes two, average people in the world. I don’t know if I agree with the numbers exactly, but I think it makes a point. Inherently, this would imply that everyone is unique.
The goal, I think, is to recognize our uniqueness and embrace it. Not just in our own lives, but also in those around us. For me, I’ve been practicing this by thanking people when they call me “weird.” This usually comes from my youngest, and she giggles when I say “thank you” in response.
Although it may have started as just words, I think it is helpful to me now to pay attention. I ask myself what being “weird” means and if there is a way that I can use this in my life. If I am weird, it gives others permission to be weird as well. It has helped me to connect and learn more about people.
My dad is a phenomenal artist, and I feel blessed to have one of his paintings hanging on the wall in my home. The unique talent he has was watered and grown throughout his life. What started in high school (over 40 years ago) as creating and drawing the mascot, that they still use today, has grown to selling his beautiful art on Santa Fe in Denver.
He is memorable and is leaving his mark everywhere he goes. In the end, our paths are unique, and the jewels we were able to find along the way are unique as well.
I think our job is to notice the ash, collect the jewels, and share what we can.
