Let me tell you about chaos.
Explain how it does not tear you apart, but seethes and simmers within, building in strength with each passing day, growing in intensity like water to boil.
And when the heat reaches your skin, all you want is to peel it off and run, frantic, panicked – because you thought that was your only option when you only had seconds to decide.
And oh, how you wish you hadn’t.
Let me tell you about chaos and how it destroys every shred of hope you once held, but selectively.
Bit by bit, they evaporate into thin air and all you have left is the thought that you really needed that.
But too late now.
There is no screaming, there is no sound.
You remember the silence most, as the whole world around you spins wildly out of control.
As your body betrays you and breaks down, slowly, and then suddenly.
You close your eyes to rest, and wake up to do it all over again.
Let me tell you about chaos.
This is now the sixth time I’ve started writing this blog. The last times I gave up after writing a few sentences, unable to put my thoughts into words. Not sure how much information I wanted to put out to the world, or if I was ready to even accept any of it myself. Then one day, as I was struggling to keep myself together, I found I needed to write what my feelings were as they were coming out. And so another of my many poems was borne, and here I am again trying to talk about the chaos that I call this life.
I’m familiar with struggle and I’m friendly with perseverance. I’ve grown used to my pathway being paved with difficulties to overcome, and my track record of success is thankfully greater than my failures. I work hard, I work tirelessly and I hope it pays off in the end. But that’s the thing – I expect there to be an end of some sort. No matter how tough things become, I’m able to keep moving forward because I feel that at some point, the difficult times will pass and I’ll get through it. That’s how we survive, isn’t it? On the faith that those times will pass. We hope to live.
But how do you keep forging ahead when that isn’t a possibility? How do you pick yourself up and keep going when you know, for a fact, that the odds of improvement, of a better life even, aren’t in the cards? Then what?
Most people are aware that my husband is disabled. Most people don’t, however, fully grasp the severity of it. And let me be clear: I do not seek pity. I do not want anyone to feel sorry for me or for my husband, but on some level, I wish they could understand better so they know how to act around us.
His condition is rare. And even as I type that, I want to stress how genuinely rare it is. Only a handful of doctors in the entire world are qualified to properly treat it, and even those doctors all have varying levels of comprehension and understanding. I’ve lost count of the number of occasions where we completely stumped a doctor. Imagine that frustration.
The nervous system is incredibly complex and intricate, so the medical world only understands a small percentage of it with any level of expertise. And CRPS happens to be one of those lovely conditions that manifests differently in people, and is only diagnosed after every other possible medical problem in history is first ruled out. A diagnosis of elimination instantly tells you how little anyone understands it. And the pain my husband experiences because of this disease is intense. It’s akin to the sensation of breaking a bone… many, many times during the day and then never having it heal. One doctor compared it to child birth pain. Now, I’ve never had a kid myself, but I’ve certainly heard plenty about the experience to appreciate the level of strength my husband must have for dealing with constant, chronic pain of this level on a regular, frequent basis.
After many surgical attempts, including killing nerve endings, embedding nerves to trick the brain into thinking it was no longer there, bone surgeries, injections, tests, trials and a million other last-ditch efforts to give him relief, we wound up with one last option left on the table. The treatment is called spinal cord stimulation (SCS). Sounds pretty intense, doesn’t it? Well, that’s because it kind of is. Essentially, it’s one of the only treatments for CRPS sufferers known to improve quality of life, even if some cases turn out to be temporary relief. Much like a pace maker, it’s an implant that goes right into your back with wires connecting to your spinal tissue. The pack sends electrical messages to your brain to dampen pain signals. Neuromodulation manages pain signals, but does not cure the condition. It is not a cure. There is no cure. But if SCS lowers someone’s pain by even 50%, they view that as a success. But with all things related to CRPS, there is no way of knowing if 1) SCS will help someone or 2) how long it could help someone if it proves a success. We thought, however, a 60-70% success rate among other CRPS sufferers was a high enough number for us to give it a go. Even now, we haven’t allowed ourselves to speculate how it would affect us if he doesn’t respond to SCS. We simply can’t consider that at this point.
Since starting the trial programme in which an army of medical professionals work together as a team to determine whether or not my husband is mentally, physically and emotionally stable enough to continue with such a serious procedure, more problems have come to light. Of course, right? Because it’s not enough that he has an incurable disease that will likely only worsen in time. It has to be even more complex.
Although no one seems to understand why exactly, CRPS is known to spread from one limb to another, or all, after time. There’s no rhyme or reason to where it spreads, it just can. My husband has it in his left foot, and in the last month, it’s seemingly spreading to his left hand now. Except! Get this – it appears to be another form of CRPS. DIFFERENT to the type he has already. He’s only had an official diagnosis on his foot for a few years, and to now be starting the process all over again for a different body part is… exhausting, to say the least. And horrifying. It’s still early stages, we think, but we’ve already begun ruling out any and all other possibilities with weekly tests and hospital visits. So the hope of SCS putting an end to the incessant misery his foot was causing was quickly replaced with fear and worry that this new development would not only affect his candidacy for SCS, but also progress to the level of pain he experiences in his foot already. This was our worst case scenario coming to life. Again, you take away the hope of a better life, what does that leave you?
I know he’s struggling, but I can’t speak for him. I’m not him. I don’t feel the same things he feels. But I do my best to show support and strength even though I absolutely do not feel I’m doing it well. I watch him hurt, I watch him panic, I watch him sink deeper into a depression that I’ll never be able to fully understand because whilst I can empathise, I don’t feel what he feels. I never worry about my being able to walk, or whether or not I can pick up a glass of water. But I watch my husband do it every day now. I have to stand by, helpless, watching him hurt and watching him stress about how to go about a “normal” life when he’s nowhere near the level of an able-bodied person. Taking the stairs is a challenge. Today, I watched him get emotional because he couldn’t pick up his burger. And all I can do is remind him that I love him and that we’ll get through this… even when I’m not so sure we can. I worry that I sound selfish when I talk about his condition, but I’m the only person who can talk about how this whole situation affects me. And he’s the only person who can talk about how it affects him. I’m scared. I’m scared for him, I’m scared for me and I’m scared for our future. We still have so many questions that will likely never be answered. Take a moment and imagine how that could possibly feel. Having a doctor tell you, “this likely won’t get better. This will probably spread to other parts of your body. This treatment may not help you.” There are no definites in any of this. And for two people who like to know all the answers, it certainly hasn’t been an easy pill to swallow.
There are moments when I’m so consumed by emotion that I simply cannot function. I get up and walk out of my office several times a day when I feel tears well up. I am constantly bombarded by friends, family and colleagues who genuinely mean well when they ask how things are going, but are actually forcing me to revisit a subject that is physically painful for me to discuss. When I met my husband, he wasn’t disabled yet. He didn’t have CRPS. And since we’ve been together, I’ve been forced to watch it degrade and become worse and worse and not being able to do a damn thing to help. And at this point in life, when we were at the brink of hopefully having relief with SCS, we’ve been ripped back down to earth to face an ugly new reality. And we weren’t ready for that. I’m still not ready for it. But this life doesn’t wait for you to be ready. And I’m angry. Scared. Wishing I could fix everything to give my husband the life, and physically-capable body, I feel he deserves. We’ve been dealt so many awful cards in the four years we’ve been together, that at this point, it all feels like a cruel joke.
I want you to understand that we are suffering. We are mourning the life we had planned for ourselves and trying to accept the one we were given instead. It is not an easy task, especially when it feels like nobody understands. Don’t tell us things will get better. We aren’t foolish enough to cling to such a dangerous hope. Tell us we’re strong. Tell us we’re capable of making the most out of a horrible situation. Tell us we’re handling it well even if you catch us having a breakdown (which we do, frequently). I don’t need you to feel sorry for me, either. Yes, I’m struggling and I’ll never deny that. But as much as I’ve wanted to all throughout this journey, I will not give up. I simply can’t. We are stronger than this pain, and I aim to prove that until my last breath.
“Be kind. For everyone you meet is fighting a battle you know nothing about.”