“God never gives you more than you can handle.”
Please, never, ever, be the person to say this to someone with a chronic illness. Or to say it to anyone for that matter. First of all, it’s actually not in the Bible. It’s most likely derived from 1 Corinthians 10, when Paul is talking about temptation. He says that God will never allow us to be tempted us beyond what we can handle, because He will always give us a way out. I also think that we should look at that in and of itself, because far too many people trust themselves too much, reassuring themselves mistakenly with this verse. A lot of the time, our way out is before or at the very beginning of a situation. So often we just slide into whatever it is, get caught up in it, and then wonder where God is.
But back to the point. The phrase, “God never gives you more than you can handle” is never comforting. It is never helpful. And when spouted off to people who feel like they are drowning in life, it’s downright hurtful. It can feel as if you are being talked down to, and (at least in my experience) you want to snap back, “try living in my body for a day or two and just see how gracefully you handle it.” Worse, pat phrases like this become almost a cop out. To come up, touch someone’s arm, offer a quick, trite phrase such as the aforementioned or say, “I’ll be praying for you!” and then to walk away. In my experience, it seems as if the interaction, the help, the community too often stops there.
No one ever knows what to do when someone is permanently sick. When someone is temporarily sick, you can rally around, you can encourage, and you can make them a priority. But how does it work when sick is a lifestyle? When it’s the norm? Most people say “Call if you need anything” and truly mean it, but vague offers often go unheeded. One of the most practical offers I’ve ever been given came just the other day when someone said to call them if we ever needed someone to let the dogs out during the day or dog sitters. Concrete offers of help can be lifesavers.
I haven’t blogged in awhile. I’ve dealt with some depression following my surgery in April, and so I just don’t have a lot to say. It’s taken all I have to try to be present for my family, and even there I haven’t been the most successful. It’s very difficult to engage when you don’t care. It hasn’t been that I was overwhelmingly sad or upset. I just didn’t care. About anything. What movie to watch. What to eat. What we did. Emotions were too much to feel so it’s almost as if they turned off.
That got chucked out the window recently. In July, I began noticing some bizarre symptoms that I started tracking in a notebook. However, it never occurred to me to link my constant headache, my neck, shoulder, and back pain, etc., to any of it. I just brushed that off as post surgical pain and ignored it the best I could. Then one day at the beginning of August, I woke up with tinnitus (ringing in the ears). It’s like I sat there and watched all of the pieces fall into place. Sure enough, I hit almost every symptom for another complication of EDS that would require surgery, this time a brain malformation that can develop. It’s called Chiari, and to explain it simply, if I do have it, it means the back part of my brain is actually slipping out of my skull. This would mean the biggest, most invasive surgery yet. So far they have done surgery on my neck, which has been complicated because of issues of brainstem compression. This would actually be inside my brain, which is a little intimidating.
I’m markedly getting worse by the week; I can see my function declining. I am exhausted all of the time but the pain makes it hard to sleep. Lying down makes my headache worse (thank you mom and dad for my fancy sleep number bed that can incline) so mornings are bad. But then going through the day takes it’s toll as well.
As fate would have it, Kelsey and I have had tickets for months now to go to DC at the beginning of September to accompany our friend Sarrah to her first appointment to my neurosurgeon. She very likely has Chiari as well, and any appointment like that is so incredibly overwhelming and you are trying to absorb so much information that going alone is terrifying. Luckily(?) I am an established patient, so I called the office, explained the situation and the fact that I’m from Ohio and that I would be in. the. office. on September 4th accompanying Sarrah and that I would be in the area until that Friday. They called back and said they had managed to get me in on the 5th in the afternoon. So as it currently stands, Kelsey and I will fly in on the morning of the 4th, pick up Sarrah when her flight comes in (she lives in Boston), go to her appointment, hopefully have time to get dinner and process together, then drop her back off at the airport. The next morning I will have my upright MRI done and then take the films to Dr. Henderson’s office and see what’s going on inside my head.
Initially, I had a week of panicking. More than anything else, it was frustration and anger over the fact that I’m not ready for this yet. I knew I was going to have to have more surgeries, but I just had one 4 months ago! I only was able to start making dinner for my family every night literally a week before the symptoms disabled me again. Now, I just want to know what’s going on and what we have to face. Currently, I’m so worried about Sarrah that I’m more anxious about her appointment than my own. That might be a little strange, but it’s helping me keep my focus. When you suffer the same, you become knit together in a way that can’t be described.
People are already starting to ask what they can do. Well, we don’t know much yet. However, the Canton Chapter of the Foundation for Community Betterment has graciously selected me as one of their recipients this year. They will work with different contractors to help make our house a little more accessible and safer for me, primarily by installing our laundry room on the first floor. Their main fundraiser is Rocktoberfest, which is coming up on September 28th. Your attendance would mean the world to both Mike and I. Look up the organization on Facebook for information on how to get tickets. We will keep you updated as we find out more.
lifeloveandcrappygenes 