A few weeks… no – a few days after I was approved for SSDI, I heard about a new clinical trial for people with mTBIs. The trial tests a neurofeedback device that, in combination with a rigorous physical therapy program, can help people with an mTBI significantly improve their balance. The study is looking for volunteers near Montreal to help with the trial, and I meet the criteria.
It caught my attention, to say the least. Coming on the heels of my SSDI approval, I couldn’t help but know I didn’t have any other meaningful or productive work to do. What does one do when not working? I still hadn’t figured that out, then. Plus, the tantalizing possibility of compensation for my time. Extra money for more not-covered-by-insurance medical treatments!
It became an obsession.
Clinical trial. I tried to find a way to make it work within the context of my life. Clinical trial. Hours and hours of thought. Clinical trial. Denial and hope all mixed up inside of me.
Because, dude. Really, this project is outside of my ability. Or, it was outside my ability when I first starting considering it several months ago. Really, a clinical trial? Something new, something extra, when I don’t have the energy to wash dishes or drive to burlington?
Mary was quick to try to squash the idea. She’s a very practical woman, and much more aware of her limitations than I am aware of mine. When I mentioned it with the gleam of obsession in my eye a week after the SSDI approval, her first response was – No! She had a valid point – we just went through a nine month epic process of me leaving my job and getting approved for SSDI… can we just take a minute and rest? Like, how about not adding anything until things have had a chance to settle for a few months?
Reasonable. And every ounce of myself strained against her words. The conversation confirmed what I already knew – if I wanted it to happen, I’d have to do it on my own. Unlike every other time she’s had a strong “No” over the past year, I didn’t immediate accept her judgement of the situation as correct, I didn’t immediately let it go.
No, I definitely didn’t let it go.
I searched on the internet for requirements, qualifications. Yup, I can meet the criteria. I called the 800 number, and did the pre-interview. A week later I got a letter in the mail with contact information for the Montreal site, and reassurance that they’d call me within a week.
They didn’t call me. Damn. But I didn’t let that stop me. Another week passed, no call. With a few days of planning and intent, I was able to gather the energy to call them and initiate a conversation. Success! I talked with one of the organizers and learned what exactly the study involves.
Yup, it’s a serious shit ton of work. Yeow. And the compensation isn’t much in comparison. Here’s the highlights:
- Study runs 5 weeks. Two weeks on-site in Montreal, three weeks at home.
- Six days a week, I’d be doing a 1.5 hour exercise program twice a day (for a total of 3 hours a day).
- Lots of trips to/from Montreal – a 2 hour drive each way. About 3-4 trips before the study even starts, then a trip to go to Monreal for two weeks, then a weekly trip during the home portion of the study
- Its a double blind sham study. Only half the participants receive the treatment.
Oh, and I’d need to get a treadmill at home.
Some of the major stumbling blocks of the project include:
- I don’t know if I’d be physically or mentally able to do anything focused for three hours a day, six days a week. If I am able, every single routine and healthy behavior I’ve put together over the last six months is in danger of being thrown out the window to give all my energy to the clinical trial.
- I can’t drive to Montreal. I can drive consistently, now, about 30 minutes one way, but that leaves me 1.5 hours away from Montreal. So I’d have to get a ride. Every single time. A four hour round trip ride… definitely not a casual bit of help. All of the study is done during the work week, and my friends work during the week. There is a local transportation organization for the elderly and disabled, but they reimburse their volunteers about 50 cents per mile – that would be a pricey bit of service to make this happen for me. A definite roadblock to my conscience.
- My current trip to Dartmouth Hitchcock – a two hour drive one way – leaves me nauseous and fuzzy and with a bad headache. Even if I can get to Montreal, how the hell could I represent myself and/or participate? I’d have to go the day before, so I’d have the evening to recover. Each time. An even bigger time and energy commitment.
- Dude, only a 50% chance of receiving the treatment. After all that work!
A reasonable person would have left it there and moved on. I, apparently, am not a reasonable person.
What is it about everything saying no that makes me want to look at it further and figure out a way to make it work? Why can’t I just accept a “no” from the universe and move on? Part of it might be that in the past, I used my will, my stubbornness, and my consistent neverending energy to bull through any obstacle between me and something I wanted. Does the piece not fit? Force it until it does. Push push push and everything will be okay. It’s this tendency that landed me with a long arc of recovery in the first place.
So, what should have been eliminated in the first few days of September, dragged into October. In October, I got more information and still didn’t stop. Early November, I decide to take the issue to my counselor.
Sometimes it is helpful to have someone who is unbiased and not brain injured to talk things through with. Before my injury, I wouldn’t have considered myself needing help, but now I know I’m a few cards short of a full deck and I welcome the help to implement logical decisionmaking.
She suggests we do a weighted pros and cons list, and we do. For a weighted list, not only do you list all the positives and negatives associated with an action, you also put a number – a percentage, or a number from 1 to 10 – about how important each factor is to you or how much of an effect it will have. Here’s my pro/con list from that meeting.
I’ve changed the percentages a few times since that meeting, as my feelings evolved. However, consistently, the Cons outweight the Pros. But it’s close – most recent count says 360% Pro and 400% Con. No wonder I’ve been going back and forth about this for months.
And still, I don’t let it go. I get a surprise call from the TBI trial during a tired moment, and find myself scheduling a January 12th appointment with them. Huh. More time passes. I ask more friends for feedback.
I submit a medical records request in November to get my physical therapy records from 2014, needed for the clinical trial. The records arrived this Monday, mid December. And now they are sitting on my desk, waiting to be scanned and emailed to the study for review.
But I haven’t done that. Also on Monday, I got a massage. During said massage, I talked with my massage therapist about potentially participating in the trial. As we discussed it, the holes in the logic of me participating made it ridiculous to even continue the conversation… because it was so obvious that it didn’t make sense for me to participate.
Huh. But I still haven’t let it go. Still…Have…Not…Let…It…Go.
I decided to check in with Mary about whether she would enjoy having the last two weeks of January home alone. Since my injury, I’ve been home basically every evening – so she never gets time home alone. I thought she’d be delighted about the chance to have me out of the house for a few weeks.
Her response? “What are you talking about? I thought we decided not to do the clinical trial.”
My internal response – Bullshit. I will not be bullied. You deciding that I’m not doing the clinical trial is not me deciding it. I am an autonomous individual. Instinct is to dig in my heels and do it just because she says I shouldn’t or can’t. Luckily, I am aware of this internal dialogue and tendency, and instead say mildly “No, I haven’t decided whether or not I’m going to do the trial.” As I see her anger rising, I divert “Let’s not talk about it now.”
I know it doesn’t make sense to do the clinical trial. Really, I know. I think my conversation with my massage therapist was the final straw. But, still, I haven’t called to cancel my appointment, I haven’t emailed to gracefully step out of the program. Why? Why am I hanging on?
I have enough little gray cells today to consider some possibilities.
I like to contribute. I like to be useful. Losing my job was devistating. Participating in a clinical trial would give some …? public acknoweldgement of my contribution. Something like that. It would be a thing. I was doing. That made a difference. Not much I do these days makes a difference to anyone except myself or Mary. I am tired of living in such a small small world.
Boredom during winter is damaging and destructive. I have been scared of the approaching winter, with no work or other overcommitted activities to distract me. It would be so easy to fall into a pit of dispair and depression. In reality, now that winter has arrived (as the snow storm outside my window confirms), things are going fine. I’m fine. I have plenty to do, and I have not been tempted to dive into any rabbit holes of negative thought.
Money. Money money money. Not being able to work = no possibility of extra income. Being on SSDI is wonderful, and part of me struggles with the idea of being on a fixed income. A fixed income, relying on someone else to pay my bills, sounds unsafe. It is not my own work, my own effort, but another entity deciding whether I can afford something or not. Maybe this is the biggest thing, the reason why I haven’t been able to let it go – it is something I can do, something I can control and make happen to bring me money. Money for more alternative medical treatments that might help me heal. A way for me to be in control of my life.
Then, there is the “what if” factor. What if this is the thing, the treatment, that will make all the difference in the world? What if this reconnecting of my brain to my body will lead to amazing leaps forward in my healing? What if this treatment is what I have been waiting for and I didn’t even realize it. What if this is the answer?
I like my life. I like what I’m doing right now. Is it everything I want? Hell no. But it is pleasant, and I am healing. Doing this trial could destroy all that I have built. My life balances on such a small fulcrum, one little new weight – or in this case a big weight – and the whole mechanism gets thrown out of wack. The clinical trial could set me back months and months of healing, it could send me into a spiraling depression, it could do so so much harm.
So, friends, I’m not going to do it. I am not. I’m going to let the damn thing go. Finally. Looking at the things that have held me back from letting it go, I consider: yes, I can let go of a feeling of being useful to the world at large. Yes, the winter seems to be okay and I don’t need to add anything to it. Yes, money is okay and if I don’t get the extra bit of cash my world will still turn just fine.
It is the last reason, that last possibility that burns in the pit of my belly. What if this treatment would have made the difference? What if it would have catapulted my healing to a whole new level? What if?