I’m not exaggerating when I say that SMA requires you to plan ahead for everything. If I don’t carefully coordinate each day with my caregivers, I can’t even go to the bathroom. Fortunately, I usually can plan for a daily occurrence like that, but other things are more complicated…
Refined By Fire — Ryan Berhar
Ryan is a simple man from Bend, Oregon. While he aspires to one day become a sit-down comedian, he has turned most of his attention to writing. He loves sharing his life experiences with people and bringing awareness to his disease. His two favorite things are sports and coffee.
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With Rare Disease Day coming up on Feb. 29, one question in particular has been circling the SMA community: “What makes you rare?” Anyone affected by a rare disease is entitled to their opinion. Likewise, everyone is uniquely qualified to comment on the concept of rarity. However, I struggle…
It’s difficult to fit in when you have SMA because you are one of a kind. The reality is I’m never going to fit in perfectly anywhere, but I haven’t done myself any favors for most of my life, either. In my younger years, I didn’t have problems with fitting…
Time to get up My day begins like this: I wake up and call my caregiver (these days, it’s usually my grandmother or my friend, Sam), who turns off and disconnects my machines. I have a breathing machine called a BiPAP, a feeding pump, and an oximeter,…
Engaging in normal conversations is difficult while in a wheelchair. If people stop staring long enough to say anything at all, it likely will be related to my disability. My appearance evokes a variety of questions ranging from ignorant and annoying to genuine and understandable. While I can’t…
Being tied to someone 24/7 is par for the course in my life. I require others to meet my physical needs. Usually, those needs are met by family, but I also worked with many different nurses throughout my schooling. During those years, I spent more time…
My Spinraza journey has been a roller coaster ride so far, filled with joyous highs and gut-wrenching lows. I am a person who likes to make a decision and stand (or sit) by it. But with Spinraza (nusinersen), I have found it impossible to make an ultimate decision.
Throughout my life, I have been blessed with some of the best friends a human could ever ask for. A few columns ago, I talked about spending a good portion of the past year with my friend, Sam. I want to dedicate this column to…
Coming up with topics to write about can be a challenge. I was trying to settle on a topic yesterday, and it occurred to me that I have yet to cover my life philosophy: “One day at a time.” This concept has entirely transformed my life. I…
Throughout my life, I have required assistance with the most basic tasks. Things like scratching my head, getting myself a drink, or picking something up off the floor are just a few items on a never-ending list of impossibilities. Fortunately, there is now technology that can help…
Coffee and Mexican food: These are two of my greatest loves, and I once again enjoyed them today, the day I celebrated the one-year anniversary of my best friend Sam’s move to Bend, Oregon. The original plan was for Sam to live here to help with my care…
The internet is a valuable tool for someone like me, especially for the purpose of social platforming. I can’t do much socializing in real life. Whether the environment is too loud for me to be heard, the venue is inaccessible, or the activity is something that I physically can’t…
The sheer enormity of SMA can easily become overwhelming. All the physical limitations can cause me to overlook the gifts and abilities I do have. I’ve found that it is imperative for me to identify my strengths, and run with them (OK, drive with them) to the absolute…
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