Dear Future Boyfriend, From Your Girlfriend With Cerebral Palsy
If you’re reading this, it probably means I am starting to think about a more permanent relationship with you. I’m excited. I’m sure you are, too — but I need you to understand that a relationship with me will be a little more complicated (I have cerebral palsy). Here’s a list of things you should know before we jump into anything.
1. You are going to have to double as a caregiver on some level.
Let’s get the elephant in the room out of the way right now. Yes, you are probably going to have to help me with daily tasks at some point. Having cerebral palsy means I need a lot of help in a day. Obviously, I don’t expect you to do everything. I’m sure we’ll have some sort of outside help. There are going to be times when you’re going to have to take the reins, though. This could mean any number of things, including: helping me up from a fall, making my meals, or even taking me to the hospital. I won’t bore you with the rest of the tasks that may be required of you. Just know that the list can shrink or grow depending on the day and how my body feels.
2. When I got something, let me handle it.
This goes against everything I told you in the previous paragraph, but don’t over-help. The way I do a lot of things (putting on a jacket and transferring myself to furniture are two examples that are currently popping into my head) might look a little different from the way you do them. It may even look uncomfortable. When this happens, it’s fine to ask if I need help. I will say yes if I do, but if I say something like “I got this,” just let me handle it, OK? I’ve lived in this body for 18 years. I know how it works and what it can and can’t do.
3. Learn to live and love the “spoon theory.”
I know what you’re thinking: Spoon theory? What does a utensil have to do with anything? Allow me to give you a bit of a crash course. Spoons are basically a unit of measurement those of us with disabilities and chronic illnesses use to describe our energy levels. If we say we’re low on spoons, it means we’re low on energy. That happens to me more often than I’d like to admit, simply because it requires more energy for me to do things than it may for you. If I say I don’t have enough energy to go out after a busy day, I mean it. We can still have fun at home, though.
4. Traveling is going to take some work.
I’m game for a weekend away visiting family or a vacation for just the two of us, but I can’t just book the first flight or hotel I see. Traveling with me is a little more complicated. I have to make sure all my equipment (wheelchair and walker) and other supplies are packed, we’d have to start the journey early to make sure there’s enough time to get me loaded and settled in, we’d have to make sure wherever we’re staying is accessible for me. Even when all that goes smoothly, there can be some sort of accessibility snag somewhere. It happens. That’s OK, though. We’ll just laugh and figure it out together.
5. Get used to me speaking in abbreviations and medical terminology.
I’ve grown up surrounded by the medical world, and as such, I understand the way they speak quite well. Things like cerebral palsy (CP), physical therapy (PT), ankle-foot orthotic (AFO), selective dorsal rhisotomy (SDR), spondylolisthesis and bilateral femoral osteotomy (a more recent surgery) come out of my mouth with ease, as do the names of wheelchair parts and many other things. I don’t expect you to understand all of them right away, but if you stick around long enough you’ll be as good at it as I am.
6. Most importantly, I am not my disability.
A relationship with me is just the same as a relationship with anybody else. If you like me as a person, don’t let my disability scare you. Sure, we’ll have some extra challenges, but I’m sure between my past experience and your new ideas, we’ll figure them all out.
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