Q: Are you okay, Brooke?

Q: Are you okay, Brooke?

A: Ya, I am. I realize it’s probably a little odd to say that. I always wanted to just be happy and get on with my life, but at first I was just really sad and had a lot of adjusting to do. I looked forward to the time when I was diagnosed, fully adapted physically (strong arms, adapted house) and emotionally (used to it and okay with it). When I got close, I still had one part of my brain which always said to me: “how can you be happy like that?” But a few months ago, I realized that it was Satan whispering to me, and not an actual legitimate concern. So, I told him to go away. I also took my time, and went through all of the stages of grief, and wallowed for as long as was necessary. It was a sad time, but I had to go through it, and it’s over now. And you know what? I’m great! My life is indeed much better than it used to be.

I think it helps that this was a slow-onset degeneration, because the transition from barely walking to wheelchair was less of a change than going from perfectly healthy to completely paralyzed. My change wasn’t that big, and I really think that helped me. Also, I’ve had like 5 or 6 other major long term illnesses and health problems in my life, though none of them are visible. From these many health problems, I’ve grown used to “things are just different for me than they are for most people.” I’ve had many decades to get used to that, and I’m good. I have come to understand and to know that my body can have little nicks and scratches and imperfections and I can still be a wonderful me and still have a happy and completely fulfilling life! This is the first visible health condition I’ve had, but to me, it wasn’t that much more than some other things I’ve gone through. It was just a little more, like each contraction in childbirth is just a little stronger than the prior one. And if I can handle the last one, I can handle the next one.

Also, many things in my life are better than they used to be, and I want to keep those better things. For one, being disabled means I’m not always in complete exhaustion from the days when I could walk but it completely wore me out. I used to think that if I could walk, I should. But this thinking made me have to rest and nap every day, not go anywhere, be in pain all the time, and not be the best parent in teaching and feeding my children. As long as I had the ability to walk, no matter how hard it was, I pushed myself way too hard in order to do it. My heart rate then was always high, as if I was exercising. I had a metabolism test during that time at my endocrinologist, and it said my metabolism was as high as the test would go, and indicated that I should eat over 3,500 calories per day! Of course I don’t eat that much, but that’s how much energy I was expending in those days.

When I got to the point where I could no longer walk across a room, and began using a wheelchair, it was actually a relief in many ways. It’s been an adjustment this past year, as my walking ability went from across the room, to just standing for a few seconds. But also during that time, my arms have grown stronger, and I have learned how to fully use a wheelchair. My energy is no longer wasted trying to move heavy legs, and I have energy to play with my kids, to teach them, and to buy and prepare food for them. I am not in pain from overexertion anymore, and I am free to have energy to pursue hobbies and fun for the first time in several years.

There may be things I can’t do anymore, but my life is truly better. My husband and children and I get to spend more quality time together as they help me do things that I could do but are difficult, such as unloading groceries from the car. I expect less of myself now. I’ve always pushed myself really hard, so even this gift from myself is a great relief. I have a great appreciation of my family, and of the things my body can do well. I have to spend a lot of time each day taking care of my body now, but it's teaching me to love myself more.

So yes, everything is just fine. :-) No need to worry about me. :-)