A couple of weeks ago we sent my wheelchair to the thrift store. It was a mark of real progress in my recovery but while I’m still me, much has changed with respect to my physical surroundings and how I am able and unable to deal with them.
Let’s start with a simple fact: I am disabled.
I’m not as disabled as I was when I had the stroke one year ago. Then my right arm and hand were totally paralyzed, and my right leg was almost completely paralyzed, so I couldn’t walk or do anything with my right arm or hand.
Now thanks to some awesome physical therapy I can walk with a cane – not very fast or very far, but I can get around the house, out to the mailbox, from the car to the doctor’s office, and so on.
And thanks to some fine occupational therapy my right hand can grab and hold some things. The fingers often stay curled as in a fist (flexion), making my hand into something like a claw. Lately the fingers have been more willing to straighten (extension) and go back and forth between the two positions.
My arm moves but does not yet have sufficient range or flexibility to reach for most things. So, my left hand reaches for things, such as my iPad, then hands them to my right hand to carry. I’ve learned to do many things left-handed, such as eat and write my name, and I control the scooter with my left hand.
That provides me with enough motion and ability to get around the house and take care of things for myself. And now that I’ve got my scooter, I can get around the neighborhood and see friends, go to AA meetings, or just scoot around. It also gives me the opportunity to do “scooter walks” with Nancy and friends. I obviously can write, and reading has become pleasurable again along with word games.
There are things that I need help with or just can’t do. For example, I can bathe and dress myself but Nancy or my very capable home helper, Christina, do it so much faster that most often they take care of it. I can’t prepare food, so Nancy usually makes my meals, which is the reverse of how meal prep was done before the stroke.
When all is said and done, I’m pretty content because there isn’t much that I want to do that I can’t do. From the moment the stroke happened I realized that the only way that I could get through this with my wits about me was to accept it and the damage that came with it.
We were fortunate that I didn’t have aphasia, which meant Nancy’s and my well-developed ability to communicate has served us well. I realized there would be a lot of struggles and thank God I had Nancy to support me – she has made the experience almost pleasant.
The only thing I have to do is keep up with my exercises to maintain the progress I have made and to gain even a little tiny bit more and just accept the fact that I am and always will be disabled.
I continue to be amazed by your good spirits and can-do attitude, John, while accepting that there are things that you can’t do. Good learning for the rest of us.
Keep up the good work! It pays off with benefits
Good work, John, and terrific work following your own story in writing.
No scooter races, now!
I am so heartened by your resilience which drives your progress. Thank you so much for sharing such a difficult yet rewarding time. It’s good to know that when each of us has to make changes, we can accept those changes and find peace in simple things.
Inspirational, John. There must be a big connection between the objective curiosity which has been with you all your life coming into play in the wake of your stroke and your impressive recovery from the stroke. May both continue!
Congratulations, John, not for the anniversary of your stroke but for all the strength and effort you have put into making so much progress – and for inspiring me (and I know others) to put my own issues and problems in better perspective and to deal with them with at least some of the courage you have shown.
Day by day, by will and discipline, you are regaining capacities. And with Nancy at your side you are dealing with this in a healthy way. You’re a role model for people similarly impacted. Continued good healing to you. Now, on a different note, in your word games have you encountered ‘homozygosity?’ Should be worth many points if you can use it. 🙂
Oh! I got fouled up calling you back for your birthday! I figured a note would be best at this point. Let me say how wonderful you sound and how impressive your progress is. How does anyone make it without the program? Even though a painful period, definitely sent by my Higher Power to help me live my life. You are doing so well with your scooter! I talk to your neural pathways all the time and ask them to reconnect some to help you. You look great and Nancy is a wonder for sure. You have both had quite a year. May this next one be even better. I love you, John. To our next birthday. I’ll be 80, my son and youngest, Erik, 50. Now that sounds old. Love and hugs, Mar
We so much enjoyed our visit with you, sorry we couldn’t stay longer. We’re happy that you are making progress, and we’ll see you.
Love you Dickie!
John, you’re a rockstar!! Keep up the good work!
John, I was Googling old colleagues the other day because…why not?… and I discovered your blog. As a writer, my take is that you’re a great writer, and this is a great read. The topic is tough, of course, but you are so clear-eyed about everything, and that makes it fascinating. Best to you and Nancy!
John, meeting you and working for you in Cambridge and then New York where I met Nancy, Brooke and Owen changed my life profoundly. You introduced me to a world of technology I knew little about but has provided for me and my family in too many ways to recount here. I frequently refer to you as the one true mentor in my professional life–but I’ve always counted you and your family as friends with hearts that are true, good, and kind. Let’s face it–everything I know about Jaguars–all you my friend.
I’m overjoyed to read your one year report of resilience and ground gained. I’m not surprised nor is anyone who knows that the one thing you never do is quit. I miss our adventures in pushing against the edges a bit in publishing but I miss our conversations even more. I hope to see you soon in Mill Valley. With my best wishes–Kevin
Great progress John. You are an inspiration for all of us as to what one can do with determination after a stroke. Best, Bob