Clinical trials are not for the faint of heart. I think I may have said that before, but I think generally because I am an upbeat and optimistic person, people may not realize the challenges that this clinical trial or frankly, any clinical trial, will pose.
I don’t say this to scare you away from participating in one. But I think a big picture is warranted.
Clinical trials can offer amazing hope. And bring amazing miracles.
But they often carry with it extreme psychological stress, notwithstanding the financial, logistical, and family burdens.
The hard part is that people often talk about how challenging it might be in terms of being away from your family (family burden), spending extra funds over and way above any actual stipend you receive (and that is absolutely the case – financial burden), and figuring out how you get your other children to school, get work done, and in some way help keep your family from falling apart (logistical burden).
But it is difficult to prepare someone for the psychological burden of being in this type of clinical trial, where you spend long periods away from your family, in a different state, often secluded from others in a small hospital room, carrying the hope that this could save your child’s life and health but trying not to hope too much, weighing the risks of multiple procedures on your child, being geographically far apart from any other family who could relate to your child’s disease much less the trial, missing major events in your life, and I could go on.
I’m not trying to throw myself a pity party here.
My difficult months are behind me.
I recently told another mom in the trial that my most difficult months were months 4-8. I was off the initial high of seeing amazing results and was settled into what then felt like it had become an entirely separate life. It was quite difficult to have one entire life in North Carolina – with daily routines, friends, favorite places to eat, and a singleminded focus of successfully getting the dose, blood draws, and other medical events with the least amount of trauma to Case. It left very little mind to consider the “other” life you led at home.
And each decision, weighed carefully in the balance of both protecting your child for the short term, but giving him a life for the long term. It was a period in which the stress grew over time, and luckily, we were ones who didn’t even have additional surgeries or other complications during that period.
Upon returning home, life was to go back to “normal” but with the aftershocks and additional responsibilities from the trip like unpacking, follow-up phone calls, planning for the next one, decisions to be made, etc. And all the while, those around you continue on, some maybe not remembering the huge event in your life that you’ve returned from and that you’re planning again just three weeks later.
You begin to feel more and more isolated and misunderstood, if you don’t closely guard your spirit.
The reason I write is that other families have begun the trial after us and I have received the question several times, “Am I going crazy? Is this normal? I feel like I’m jumping out of my skin, crying at anything, and just generally freaking out.”
So if this is you, or if this someday may be you, it is normal.
It is normal to feel as if you are sitting on a precipice. You are dangling your feet as you watch the bridge being built, hopeful that your child can someday cross it. But the watching is the hardest. And of course, it is so hard to care about Johnny’s birthday, or Susie’s new dress, or your friend’s new lip gloss when your eyes are so focused on watching the bridge and keeping yourself from looking down at a 10,000 foot drop.
The very nice thing about clinical trials is that we as patients are free to speak. We are under no confidentiality agreement. Do we feel a responsibility to be “responsible” in what we say? For sure. I only speak the truth and always measure what I say with a reason for speaking publicly about it. But no one has sought to restrain my freedom, thank goodness. Because it is in speaking, both publicly, and with others we trust, that keeps us both grounded and focused in what we are doing.
What keeps us sitting on the precipice instead of tucking our tail and running as fast as possible in the opposite direction? The hope for the bridge, for sure, for our child and others. The knowledge that God has a plan in this and that it is much higher than my meager mind can contemplate? Absolutely. But also, it is the other moms who sit with us, locked arm in arm, whether by Facebook, Skype, e-mail, or otherwise. Because sitting alone on a precipice is not only lonely, it is infinitely more dangerous to the psyche. Alone on a precipice is scary, nine on a precipice becomes analyzing the bridge, calculating the time to complete the bridge, calling others to sit with you, creating the line of new precipice sitters, laughing with joy that you are there together because no one else in the world understands the feeling of sitting right there, at this very precipice, except those other moms.
So if you are someone who loves a precipice sitter, realize that your love, encouragement, and support matter. They are the harness that allows us to sit at the edge, free to dangle our feet and look over, often fearful, but with help to keep us there. Without that, we might lean out too far, to our own detriment. Or, we might cut and run away from the edge.
And if you happen to be a doctor or nurse who interacts with us sitters, please realize that what you say and do matters too. Thank you for working to create the bridge and for telling us about the bridge, and please don’t remind us about the precipice any more than absolutely necessary. And thank you for not asking me to keep the bridge a secret. The slope is ever so slippery.
So for my those in my harness, thank you, you’ll never know how much you kept me from peering over the edge just a little too long.
And for my friends who sit with me, thank you. I thoroughly enjoy watching the bridge with you.