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Pioneering With Your Illness

Your PATH?

In my attempt to chart the best path with my disease over the last 5 years, I've realized that it's a bit like being a pioneer in a dense, virgin forest. No path is the one you will take. Having gained a perspective that I wish I didn't have, I am learning a few things along the way and want others to somehow benefit from my experience. So whether you have an illness (I hope you don't!), or know someone who does, I ask that you share my recommendations with someone who is dealing with an illness or knows someone who is. I assure you that your gesture of help will make a difference to someone.

So, for a person diagnosed with a chronic disease or illness or perhaps any sort of adversity:



Always wanted to be CEO? I have good news-- now you are. And if you never wanted to be CEO--now you are! Embrace it; it's the only way you're going to maximize your chances of the best outcome. The days of letting the doctor lead and hoping for the best are gone. No one has more to lose than you do; no one has more at stake than you do. Captain this beautiful ship!


Your trusted advisors. Choose a handful with varied backgrounds and different skillsets. A few you'll need are research, analysis, insatiable curiosity, openness, and courage (to confront you and disagree with you when necessary). This will be your Board of Advisors.


Accept the support! Invite communication, discourse, and healthy friction. Listen...and hear-- there's a difference. Ask the tough questions, and encourage your team to ask the same of you. Pursue every avenue and let your team do their work. Be open; let your fears be known. Be vocal. If you want something, say it. If you feel something, say something.


Never go alone; have at least one person with you. You have worked with your team to prep the agenda, and your handler takes the notes that are subsequently shared and discussed with the team. Be chauffeured; you don't need to worry about traffic, directions or parking. But YOU do need to know the specific location of your visit. Many of these hospitals and healthcare complexes are like small cities, and a mistaken location can result in a mile walk or having to retrieve the car and drive again. You don't need the added stress or impact on your day.

Don't plan anything before or after your appointment; they run late and often longer than expected. Some that I thought would last 5 minutes have lasted 2 hours (starting late, of course) and vice versa.


While your entire team takes some responsibility for your journey, you're the one accountable. Don't blame. Have a laugh, hug it out and move on. Keep your sense of humor, even if, like me, you're the only one laughing at your jokes! (I have some great ones, I have to admit.)


There may be a time when you disagree with your team-- all members of your team. Maybe you want to try something unproven or experimental, even outside of a clinical trial that your doctor won't support. Maybe your team thinks the risk is too great, but you are willing to take the risk. You and your team have done the research; you've had your "healthy friction" discussions, and your gut is telling you to go for it. Then go for it. There are some things that you just know you need to do. Once you make that decision, your team will rally behind you.


I've been somewhat amazed at the absence of specific metrics used to analyze or inform the progression (or regression!) of the disease's effect on me. I feel slower, for example, but am I? I wanted to know if I was slower and if so, by how much. So I came up with my own ways to measure. When I could still jog (more like a cross between a plod and a walk...or "plawk"), I would time myself for 12 laps at the track. Then I would do it again 3 months later to see how it compared. I was 12.1% slower over the course of 9 months. Come up with ways to measure certain activities; then measure and document your results. They will inform you, your doctors and your team.


This is no time to deprive yourself; in fact, it's a time to treat yourself as much as you can, and to let other's treat you.


I was reading something in The New Yorker the other day about a prescription a doctor had written for a patient. On the empty bottle was written "Self-compassion. Refills: Infinite." Give yourself a break...alot of them.


This can be hard, and can take a certain amount of courage. It does for me. If you need help with grocery shopping, ask. If you need help opening a door, ask. I've come a long way in this category, but I need to be better. In fact, I've come to enjoy it; it allows me establish a real human connection with a perfect stranger. And the simplest act can be so helpful! And when and if they need help some day, maybe they will remember how you asked for help and they may be inspired to do the same!


Have someone on your team do this for you. It may feel like a pain, but it doesn't take much and can be immensely helpful to you, your team, and your doctor(s). How many times have I fallen in the last few months? I fell 3 times over 2 weeks, extending to 4 times over 3 weeks. How did the falls happen? What medications have you taken? What were the dosages and frequencies? What did the doctor say about stem cell when I asked? When did he say to stop the blood thinner? Was it Rifampin or Baclofen that was supposed to help the cramping? Did he say they were ok to take with Clopidogrel? My point is things can get very murky very quickly when you walk out of that document, time-stamp and share!


It's not easy to do; in fact, sometimes it's really, really hard. But when you are ready, write down something positive that wouldn't have happened without the illness. When you do see that sliver of silver lining-- whatever its size, hold onto it because you are going to expand it over time, and you should consciously make an effort to do so. Build on it as much as you can at whatever pace you can manage. A door closes; and there's a it!


Right or wrong, it's the way it is sometimes. Be persistent; better yet--have one of your advocates be persistent on your behalf.


If you think of something that can be added to this list, please comment so others may benefit...thanks!




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