Everyone Feels Different
Written by: Suzy (co-founder) 10/02/2022
We live in a world where, let’s be honest, it doesn’t feel good to feel like we’re different from society’s “normal” standards. I think in today’s society with the internet and social media, it is much easier to do research, and find support groups to help with that feeling, and the realization that you’re not alone in whatever you’re going through, or in the feelings that you have. On the flip side of social media, it is also much easier for people to be mean to others while hiding behind a computer. One thing to understand is that even if you were to find someone going through the same exact thing, and you both have very similar feelings on most things, there are going to be things that affect you differently, because everyone feels different, and the idea is to be empathetic and supportive of different feelings.
I have people very close to me that either have some kind of disability, birth defect, or serious medical condition. I feel like living with DBS (Disability, Birth defect, Serious medical condition. Can we make it a thing so I can abbreviate?) has a lot of similarities, universally, but it also really depends on each individual, and the DBS. Everyone processes things differently; what might be hard for one person to cope with, might be manageable for someone else. I personally, am able-bodied, and a lot of the things I’m going to discuss in this blog I couldn’t possibly understand, and I’m not trying to compare struggles, or make them seem equal. Even being able bodied I have my own struggles; I’m socially awkward, introverted, and feel like I don’t fit in anywhere, but yet at the same time, I know I’m extremely fortunate that my issues are so small compared to others.
I’ve read some blogs by someone with DBS who is very open to stares and questions from kids, however, my aunt is not so comfortable having her Syndactyly pointed out and questions asked. In the past when kids have asked her about her hands, she usually makes up a silly story about how she uses them as a spoon, and they got like that by sticking them in glue. I think she does that to make light of a situation that is making her feel uncomfortable. She has also had adults ask things like “oh my God, what happened to your fingers?”, to which they’ll typically get a much deserved reply of “nothing. What happened to your manners?”. I feel like the best thing able-bodied people could do is just try to be respectful. Kids are going to stare, but parents if you notice the person feels uncomfortable maybe try to distract the kids and discuss with them later. However, if the person seems chatty and wants to engage with the kid, or adult, and educate or answer questions, then that would be an awesome learning experience! Just understand not everyone feels the same way or wants that type of interaction.
When my mom had breast cancer, she didn’t seem to let it affect her too much, she only missed a very few days of work; when she ended up with PE (pulmonary embolism aka blood clots) in both lungs, and maybe a one or two other days here and there where she was really feeling extra horrible. She wanted to take charge of her hair loss, and shaved her head before her hair started falling out. That was her own personal way of processing it. I’ve read stories that are similar to her own, and others that are completely different. There are no right or wrong feelings. When my cousin was about 12 her mom took her to the doctor because it looked like one shoulder blade stuck out more than the other, the doctor said it was scoliosis and that she’d need to wear a back brace. Simple enough, right? Well, he also said he was concerned because her spine curvature was to the left, and generally it is to the right. After imaging was done, she was diagnosed as having Chiari Malformation, something that typically isn’t discovered until adulthood. She basically had to have brain/skull surgery. I remember going to all of her appointments, and kids being kids, I never saw my cousin as really anything other than herself and just wanting to be a kid and play. She still has some lasting symptoms now that she is an adult; she gets really bad headaches, and her back hurts probably more than someone with a typical backache, but she almost never complains.
My husband, Ian, probably has the most severe DBS out of everyone else I’ve mentioned. Ian was born with a rare birth defect called Sacral Agenesis, born without the lower portion of the spine called the sacrum, that caused him to have a neurogenic bladder, and neurogenic bowel. This was not discovered at birth, it wasn’t discovered until he was around the age to potty train and his mom started noticing he seemed to be having issues with incontinence. The doctors in Arizona told her he was just lazy, but she was able to take him out to Boston Children’s Hospital where they diagnosed him and recommended treatment. At some point while living in Boston he had a bladder enlargement surgery. Eventually, the Neurogenic Bladder causing urine to back up into his kidneys has now caused Kidney Disease, and he is on dialysis. The urologists won’t list him for kidney transplant until he has *another* bladder enlargement surgery, or lifelong routine botox injections, because they believe the neurogenic bladder would damage a new kidney within one year. My own observation of Ian is honestly a combination of really struggling with everything he has to deal with, and coping better than I think I might in his shoes, or, maybe we’d just cope better/worse in different areas. I think Ian has had a very hard life, at such a young age he had so many scary tests, didn’t understand what was going on, and had to self-catheterize. He was picked on and bullied at school until he one day had enough of it, started fighting back, and getting in trouble. He made friends with the wrong crowd of people, but even when they found out about, or suspected, some of Ian’s medical conditions, they still accepted him and never spoke a word about it, so I get why they meant so much to him even though they weren’t the best influences. I think he went through a good part of his life where he didn’t think too much about his medical condition. Now that he is getting older, and still grieving the loss of his mother in 2002, being faced with the uncertainty of his life being on dialysis, and needing a kidney transplant, I feel like I see a much more scared and worried person. He cries a lot, and some days really struggles with dealing with dialysis. He has made comments that he doesn’t want to do it anymore. He gets bad muscle cramps, and is stressed out when there are issues with his dialysis machine, understandably. He started doing hemodialysis in a center, and is now doing peritoneal dialysis at home overnight. Peritoneal dialysis is by far the best option for him, even though he has days he struggles, hemodialysis was almost unbearable. I’m sure there are a lot of people who have very similar feelings, and experiences, and others where it is the complete opposite.
Everyone feels different about experiences that they go through, no feeling is right or wrong. What might not seem so bad to one person, is life altering and hard to get through for the next. Except for stubbing a toe, or clogging the toilet at someone else’s house, we can probably all agree that is just traumatic ha-ha-ha! I’m new to this whole blog writing thing, I feel like I wanted to explain the things that the people close to me have experienced for whoever reading this to hopefully be relatable to things they’ve experienced, and feel, or maybe someone able-bodied that is just experiencing a loved one going through something to help understand what they might be feeling.