The scene
As Joe and I were preparing to leave for the happy/sad week with my family, we had a major plumbing problem. Since we could not resolve it before leaving, we left on our mini vacation anyway. Friday, we traveled seven hours to our son’s home, which we used as home base. Monday, we drove four more hours to reach the first of the happy/sad events. A celebration of my brother John’s college graduation. Happy. Laughter. Tuesday, we held the final celebration of his wife, Lynn’s, life. Sad. A few tears.
We returned to Tom’s home to rest. The next Friday, we planned to have dinner with my very extended family. Saturday was the family reunion, with over thirty people present. All three of my brothers plus nieces, nephews, grands, several cousins, and my ninety-year-old uncle attended. Some people I had not seen for decades. We missed Evelyn, Dave’s wife, who also passed away last year. Sadness, yes, but so much joy and laughter and catching up occurred that day.
So …
But I could NOT do what I desperately wanted to. First, traveling is quite tiring preventing me from participating as I wished. Second, on Friday, unanticipated, unexpected fatigue occurred keeping me from attending the dinner. Major disappointments.
On the positive side, many people cared for me. Some pushed my wheelchair. Others made sure I had food. Two showed me how to use a pool cue from my wheelchair, and one played darts with me. They helped me walk when I was off-balance. And on and on.
Even though things did not go completely wrong, I had to adapt activities and accept limitations to weather the difficulties. Then I could enjoy and participate whenever possible.
And I’ll bet you have experienced this more than once in your own life.
So, what can invisibly disabled people do when things fall apart? You have an upcoming event you consider supremely important and not to be missed. But you unexpectedly encounter tremendous difficulty doing it. What can you do?
Now what?
Anticipate
- Plan in Advance.
- Consider what will be involved.
- Think about your abilities.
- Think about what you might have trouble with.
- Study possibilities.
- Arrange for viable alternatives, if needed.
Evaluate
- Keep track of how your body is functioning.
- Realize when you need to make changes.
- Accept the necessities.
Compensate
- Implement the contingency plans you made.
- If you don’t have any, figure out realistic changes you can make.
- Adapt your original plans and carry them out.
- Relax, stay calm, and enjoy yourself.
Finally …
Especially remember to have fun. In the case of my happy/sad time, everyone there was aware of my problems. And I knew they loved me anyway, so there was no pressure to perform. It is true that I could not do what I wished to do, but I had fun anyway.
That’s where acceptance comes in. Accept limitations. Adapt plans. And you will be able to weather any difficulties.
Can you share an experience when you were unable to do something extremely meaningful to you?
Investigate Further
When things fall apart for you invisibly disabled, you may need help managing your challenges. Or you may want to learn more about how a friend can manage their challenges. Read When You Can’t Do Life or How to Plan Coping Strategies to Improve Life or check this page out.
Read tributes to Lynn and Evelyn.
Read more about my challenges in chapter 5 of our book, Sunbreaks in Unending Storms.
I’m very sorry about Lynn, that’s a bittersweet kind of few days alongside John’s graduation.
Best laid plans though, eh. I think many of us will illness / disability find that planning and prep is needed to do anything, and yet it’s ironic with how difficult that is to do when health is poor and temperamental. “Prepare to be unprepared” is what I like to say. There’s often something that could put a spanner in the works, and we can often count on our health to do just that!
The travel you had to do was extensive, I’m not surprised that hit you hard afterwards. I’m sorry you had to miss out on some parts of your time there and couldn’t do all of what you’d hoped to, but you went. You did it. You could have let the potential problems with your health put you off trying in the first place, but you didn’t. That’s a major achievement already. I agree with how adapting what you do and accepting whatever limitations there may be is important because you want to try to enjoy whatever you can, without fighting your body or getting disheartened and fed up.
Great tips that could really help others when they perhaps inevitably experience similar. It’s good to get reminders too; I find that even though I know the best things to do when things fall apart, it’s not always easy to go with the flow and I can’t help but feel angry with myself or upset. I’m really glad everyone there was so supportive. They sound like good peoples!
I’m sorry you guys had to go back home to waterworks problems. I saw your reply to another comment – I’m glad this has all been fixed now but 10 days without running water must have been quite the challenge!!
Caz xx
Thanks for reading. I love that phrase “Prepare to be unprepared.” Haven’t heard it before, but it’s so true. May I borrow it?
I’m glad you were able to get your plumbing sorted 🙂 It sounds like you’ve had a very productive time and improved on your pool playing skills!
It was fascinating to find out you could shoot pool from a wheelchair.
There is so much good advice here! Remembering to be adaptable and to have fun applies in many situations.
I’m glad you got the plumbing problems sorted and are ready for more adventures (and blog posts!)
Thanks so much for your input. And we’re really glad we got the plumbing problems fixed too. 10 days without running water is a bummer!