Katie Beth and I got in Monday night from a weekend with other warriors in Houston where I was able to speak about being an empowered patient. That immediately followed an e-Patient Boot Camp talk in Orlando with e-Patient Dave. Preparations and traveling drain so much time and energy that I haven’t been able to write much here. Then there are the Rituxan infusions like bookends around the events. Today is my last infusion for the clinical trial.
None of us want to feel weak or give up. How do we sometimes accept help without ever admitting defeat?
Yesterday, when I mentioned 10 Commandments of Chronic Illness, two men wrote comments with similar ideas:
- “I’m struggling with accepting how the pain has changed me and just admitting this will be with me forever no matter how hard I try to wish it away.”
- “In my mind, I’m still Superman… I have kids. How do I accept limitations, or ask for accommodations? I’m teaching them that I am no victim. Life what it is and to a great degree what we make it… I still have a hard time reconciling it all… Be well…”
What is the balance between being your superman-best and accepting needed help? Important questions!
First of all, our perseverance shows our strength
1. The starting point is realizing that people with RA disease are not people who stop certain activities because they gave up on life. They have a disease that can restrict or alter abilities against their will – either temporarily or permanently. Yet every person I know with RA tries their hardest to do as much as possible. If the invisibility of RA says “Lazy,” then RA is a “Liar.”
2. If you know people with RA, you also know that they tend to push their limits. They often suffer privately for the way they push themselves publicly, either daily at work or to be involved in special events with those they love. This shows they are strong, not weak.
3. If disease activity lessens or a treatment begins working, people with RA do more, OF COURSE. Anyone who thinks people with RA just need to try harder, complain less, or take anti-depressants to get over it has not been paying attention. When symptoms lessen, people go back to the activities they love.
“Limitations” or “accommodations” are not admitting defeat
This weekend, we saw a man carried up stairs in a crowded restaurant while his electric chair was carried separately. The same man adapts to go skiing and perform other sports competitively. Limitations and accommodations are part of his reality in certain situations. Yet, being a victim is not.
Another friend of mine earned her PhD dragging herself across campus on crutches. At first glance some might think her life appears limited by certain things that seem difficult. Yet her achievements surpass the rest of us in many ways because she has not been defeated by RA.
Examples from your lives could keep me going all day. To me and others who really know you, you are Superman, too.
If you love the way Superman steps up to save the world, you know there are times he needs his friends to save him from Kryptonite first. But Superman never ceases being Superman. And the moment the Kryptonite is removed, he flies free.