As I travel this new path, I’ve found it’s been really tough to adequately explain to people what is happening to me. I mean, the real, in-depth explanation of ALS, what happened, and how things are progressing is not only incredibly difficult to understand for normal people (yes, I’m including most of you in this category) 🙂 it’s also somewhat burdensome to try and convey without one or both of us either, a) falling asleep mid-story (especially awkward for one of us), or b) crying our eyes out together (likely awkward for both of us).
Yet, short snippets and tiny tidbits of oversimplified information don’t properly define the gravity of the situation, nor do it any justice. One party is left with an incomplete and unrealistic version of the issues surrounding this brutal disease and the other is left unfulfilled in their attempt to impart understanding and awareness of how it impacts all the people – whether they be patients, family, or close friends – who are unfortunate enough to be in its path.
Candidly, it’s a lost opportunity.
That leaves me to try and explain with analogies. Far from perfect, but easier to consume. They provide a simple way to tell the story that will hopefully find some relativity in the search for understanding. In case you hadn’t quite figured it out yet, I’m going to try to use an analogy to explain how the progressive nature of Amyotrophic Lateral Sclerosis plays out. Bear with me, I’m new at this storytelling thing. 🙂
Let’s say I give you $100. (Those of you who know me might think that highly unlikely, but just play along, ok?).
You take that $100, but you must put it in the Bank (or Credit Union… I’ve got friends at both, I’m not going to play favorites here). I know some of you who would put it in your mattress. I’m not going to get judgy here, but let’s just say that’s not an option for the story, please?
Your brand-spanking-new account has some unfortunate rules you needed to accept when you made the deposit. You didn’t necessarily want to accept these terms, in fact, you hated them, but they were forced upon you and you simply had no choice. Let’s go over some of the details, shall we?
First, whether you use the account or not, during the first year you’re going to be charged $2.00 every single month, just for funsies… or as they more formally say, for the right to maintain a live account.
But wait, there’s more. Now, if you’d like to do something physically fun, like say go snowmobiling or on a nice hike, you can do so, but it’s going to cost you another $1.00 or more each time as an ‘Activity’ charge. You’re not overly happy about these terms, but hey, it’s all good, you’ve still got plenty of money in the account (and you were given the money anyway).
At the end of the first year, you get the details of how future charges will work. Now you’re going to automatically pay $2.50 every single month from your account (remember… funsies!). And, what the hell? Now the ‘Activity’ fees you incur will be at least $3.00 – and you will be *very* limited on what you can actually do.
That’s it. You’ve had enough. You decide to close the account and look elsewhere for better terms.
NARRATOR: “Please refer to Section 4, Paragraph b, item 2a of the deposit agreement that you neglected to read. It states that you do not have the right to move your account. Bummer.”
As you curse the small print and reflect on the silky smooth voice of the narrator, you start to reconcile (yes, pun intended) the situation. After the first year, the account used $24.00 just to cover the opportunity to keep the account alive. Plus you used $6.00 for several memory-making expenditures. Now you’ll incur another $30.00 just to keep the account alive for the second year, not to mention the cost of any Activity surcharges, if you’re actually able to do them. You’ll have already expended over half your funds, and you’re going to need to make some adjustments.
Fine. Whatever. You decide to simply make a deposit into the account so you can maintain the quality of life to which you’ve always been accustomed.
That’s when that pesky agreement rears its ugly head with the reminder of two of its more egregious terms.
1) You can spend from the account all you want, but you can NEVER make a deposit back into it; and,
2) When you were given these funds and opened the account, they became the entirety of all funds you have available to you for the remainder of your life. Spend wisely.
You’re incensed. This is outrageous. This can not be happening. It’s not supposed to be this way. You’ve always spent as you wanted to live your life, and then you always simply made a deposit to replenish the account.
But then your anger turns to dismay. Your frustration turns to despair. The reality smacks you right across the face.
These funds are going to be depleted. No. Matter. What. You. Do. And should you try and live life with the desire, drive, and passion you’ve always possessed, the account may simply drain more quickly.
It seems such a no-win situation. You feel it just can’t any worse. Wrong. As I like to remind anyone who will listen to me, it can always be worse. And indeed, it is.
For there is one final gut punch. You’re reminded that when (not if, but when) your account falls below about $30.00, it can be closed at any time, terminated without notice, and you’ll have nothing left.
Now you’re in a panic. You start to do the math. You review prior expenses, looking for errors or oversights. You consider making spending adjustments. You know you can change the outcome. You’ve always somehow managed to overcome any obstacles, financial or otherwise. Then, as the entirety of the situation unfolds before you, you understand that, no… unfortunately, you can not fix it this time.
You now understand that you need to change your focus. As you review this life ledger, you feel the overwhelming need to reconcile. Not reconcile the account, but reconcile your life. The people. The relationships. The past. And whatever you have remaining in your future. You now know you need to square your accounts, and do so in a timely basis, as your ultimate desire is for every relationship to have a positive balance when your life ledger is finally closed.
But in the end, you’re simply left wishing you could have just made another deposit.
