So…I’m stuck. Stuck because I feel there’s a gag order on me. I’m stuck because I don’t know what protocol I should be following. Advice from those who know me well is say little. Keep quiet. Don’t make waves because consequences are real. It goes against who I am. If I take a path, and walk it, I do it not only for me, but to share with others who might benefit from my story. If it was just for me, well I wouldn’t likely do anything. I don’t mind standing alone, so long as someone else can use what I am going through to help them. So I know that being quiet is not really my thing. I’m also not one to stand on a soapbox and preach to the masses. That isn’t really my style either. My style… is this… if someone asks, I will answer to my experience and my truth. I will not evade the questions. I accept that actions and answers have consequences.
I am not doing anything wrong or illegal. I’m falling into a grey area where it’s legal, but with severe stigma, misinformation, fear, and misunderstanding. There are two sides to the same coin, and both sides need to be part of the same conversation. I am part of the revolution that is happening right now.
Thursday I start the process of being evaluated for a wheelchair for MS. My legs are failing. Not in weakness, not in numbness, but in spasticity. If I want to leave the house, I need something to be able to do things again and not worry about pain. My legs spasm and tighten at a very short distance. Then they drag, and although they are not yet completely giving out (it’s starting to happen where the searing spasm hits and the leg refuses to bear weight, but it’s still uncommon,) I am losing the ability to lift my legs to take that next step, and what starts out as a decent walk becomes a slow zombie shuffle very quickly. I have to judge everything by how much walking is involved and extensively plan my routes based on benches, and rest points, and what if there’s nothing in between where I want/need to go and where I start. I push through and pay for it. My independence is shrinking. I am scrappy enough that barriers don’t really get me down, they are just things I have to work around and find solutions to – even if it sometimes means fighting impossible odds, or “The Man” to get something that will benefit not only me, but others like me. (Example: I will probably have to get my employer to install power assisted doors at work because the only doors that are power assisted are the washrooms, but not the door to access those washrooms – what the hell is up with that? So I will fight that battle, but I will still show up every day and figure out how to work around that barrier until it’s fixed.)
So here’s what I think I am going to do. I will live like I always have. I won’t talk about treatments and equipment and such. It just won’t be chatty about it except with the people who have my back and know about my situation. I will answer any question asked by anyone who is curious or just wants to know because the quickest way to end stigma and fear is by being open and honest. I have never been shy when people ask about the cane, or about MS or about anything I’m going through. I accept the consequences of sharing my story because it’s really the only way to break down barriers, quell fear and shed light on what’s really a dark personal experience.