Experiencing disability can be a lonely journey, filled with self-isolation in which the comfort of silence is at first welcoming, but soon deafening. For years a very good friend of mine has been dealing with Multiple Sclerosis (MS), according to National MS Society this is an affliction which affects over 2.3 million people worldwide and can put an incredible amount of pressure on a child.
Long ago, I used to read a blog written by an anonymous girl who simply went by the name of Alice. The young girl chronicled her father’s increasingly deteriorating state including heartbreaking accounts of her father’s pain and suffering at the hands of MS, as well as how it contributed to the hatred she built up for her father. Reading the blog became an obsession for me, as I turned over and over in my head a day in which my friend’s children are in a similar position, lamenting him and wishing he was dead so they could have a normal life.
I’m blessed to see that he has the love of his children and he would do anything to maintain it as far as I know him. In this case, he may not have a choice and making them happy would be secondary to keeping himself going, as much as he’d hate it I guess.
There’s some experimental treatments, but they usually cost far too much and are mostly reserved for wealthier private patients. I think that’s why he has entered a program of specialised healthcare treatment and he is doing very well.
I wouldn’t want his beloved children to go through depression, anxiety, or fear on his account and I don’t think he would either. At the same time, he would want to be a part of their lives and have them around to ease his potential suffering. He might feel selfish, but cannot take the proper steps to protect them from the potential heartache his condition could cause. Occasionally, they invite their children along to their regular medical check-ups and contract logistics meetings where they do their best to explain very carefully and educate them on MS, but sometimes they’re too young to understand beyond the fact that their daddy is sick.
This begs the question of what happens next for my friend. The day will come when their roles will reverse, his children may have to care for him more than he can possibly care for them.
Other times however, I can see that he feels unstoppable, moving forward day by day with the same strength he’s always harnessed to keep his illness secondary to his duties as a parent, never letting it prevent him from being the best father he can possibly be. Even with the future unclear, sometimes we can only accept our lot in life and do our best to respond with positivity. I think he is also very lucky to have wonderful people along for the journey. Over time, his son and daughter and the continued support of his wife has given him a new perspective on parenting with MS, as far as I see.
I think about Alice and everything she had to go through and subconsciously I feared my friend’s children felt the same way about him. This ultimately highlights the differences that every disabled parent faces, as well as the different experiences it provides for their children. In the end, I have come to believe that whilst disability may one day prevent people from parenting, I think they can never stop being a parent; this causes me the most pain of all.