We did something today that we thought we'd never do again.
We knocked on Tessa's door.
Yesterday, as I was shopping for snow globes, the phone rang. I asked the clerk to put my top five on the counter so that I could consult with Joe, who was paying for out tea in another shop. I scooted out into the mall to answer the phone and wait for Joe. I am, indeed, a multi-tasker. On the other end of the line was Tessa. She was calling to tell me that there was a possibility that she'd be able to come home to her apartment for a few hours, maybe even a couple days. She then dove into asking questions.
My disability is, or was, more significant in it's impact on my life than Tessa's was on hers. She now wanted to ask questions about how we'd adapted our apartment. Personal questions about toileting and dressing, questions about a life adapted. I appreciated that she knew that she knew me well enough to ask some deeply personal questions. I answered willing, with as much detail as I thought she needed. Then, on information overload, she said goodbye. Joe arrived. We picked out two snow globes.
I had a deep sense of satisfaction. Being able to answer questions out of personal experience not out of theory or training was a profound experience for me. I knew she knew that I knew. More. I knew that I knew that what I knew, I knew. A couple of weeks ago, when talking with a visiting lecturer about something he'd said during a training he said to me, 'Your disability has been very instructive for you, it's now forming how you think about what we do and how we do it.' It's all true. Disability is an experience, but it's also a kind of 'training' in living adaptively, living creatively, and living differently. It's about living with barriers and prejudices and it's also about living deeply in interdependence and deeply in connection.
This morning, talking with Tessa, she was scared. Really scared. She had gone into palliative care believing that she had only days left. Then weeks passed. Now, there is the opportunity to go home, for hours, maybe even for a sleep. It scares her. I suggested that she try to turn fear into anticipation if she could. She said that she thought that she might be able to do that. She ended by asking for prayers.
We were out when she arrived home. So there we were, knocking on her door. It was answered by one of her friends, Tessa was in bed and sleeping off the exhaustion from the trip. It had gone smoothly, she was thrilled to be home. She was only there for a couple of hours. We tried to stop in again for tea, but she was again napping. It didn't matter. Her visit was to her home. She knew we were over here across the hall. We knew she was over there across the hall.
We knew that she knew.
She knew that we knew.
Sometimes that really is good enough.
I'm so glad Tessa got the chance to return home, even if it was for a short while.
ReplyDeleteThat is excellent; I hope her trip home was good.
ReplyDeleteI also hope that when I reach the tail end of my life I have such thoughtful, helpful, and caring friends as you guys are to your friend Tessa.
Prayers being sent to Tessa.
ReplyDeleteHome; your own place where you are between your own loved things and often as near a possible to the people who you love and who love you.
ReplyDeleteA great place to be.
It sounds so good that Tessa can be there.
Thinking of Tessa
Julia Brigitte Flesch
(from Germany)
I had another thought about being disabeld myself and sharing the experience with others. But it does not seem appropriate in this place. Maybe another time...
Julia, now is as good a time as any other, please do tell ... I'm curious.
ReplyDeleteI hope she got to see the trees. Prayers for all of you.
ReplyDeleteWelcome HOME to Tessa. It is one of those times when the song, "Lean on Me," comes to mind. Friends are the best companions on the journey.
ReplyDeleteAn Update: Tessa was home for only a few hours, the whole thing exhausted her. She slept most of the time at her apartment, but did love sleeping in her own bed. She won't be coming back, she just told me - begging off visitors for the day, that it was just too hard for her to do. She is now comfortably back in her hospital room, I imagine, snoring.
ReplyDeleteHi Dave,
ReplyDeletegood to hear that Tessa loved being at home. Sad to hear that it exhausted her so much.
But I am glad she has the option and will have it in the future, even if she does not intend to do it again.
All the best for Tessa!!!
To the disabeld experience:
As I always mentioned I have a very complex congenital heart defect. I underwent four open heart surgerys but I was only palliated not repaired completly. I have to take 17 pills daily for my heart and my circulation.
I am working but only five hours a day, because more I can not manage. I am in a group of people who life like this because of the medical possibilitys. There is a net of doctors and specialists who help me to life as independent as possible but I get help if needed immidiatly.
Sometimes I am in an internetforum where other people, parents from children and grown ups with congenital heart disease talk about the problems they experience with medical issues and with society.
I have just a normal insurance.I am not better than any of them. But I have my own ideas and life regarding life and deaht and I know that doctors are only human beings to.
Sometimes I try to help with my own experinces. And sometimes I get sooooo angry about some of the parents and others with chd. They always blame their problems on the system and others. They always say, that others are the source of their problem. I tell them what I did when problems regarding my health arise. But I tell them, that they have to work to if the problems of their childen or their own problems should get a solution.
There is a mother complaining that her 12 year old son is drinking certain sportsdrinks which are not good for him (because of his blood pressure). There are two grown ups and one mother going to several doctors and hospitals and saying they dont do enough for them (their child).
Sometimes somenone has to make a decision (that ist what I did and that ist what my parents did for me before I was old enough) than you have to life with your decision. No one else can do it for you. You are the one with the responsibility for yourself and your children.
But sometimes it is better to blame others than decide and live with your decision. Sometimes it is necessary that you talk to your child. That you live with a certain discipline regarding your lifestyle (to much weight for instance ist not good for the heart but they tell me, that the doctors are the ones annoying them when they tell them about weight loss) and you are always a role model for your child. If you dont want it to drink thes drinks do not drink them yourself.
Why are people not able to see, that caring good for themselves an their health they have to act in a responsible way for themselves.
But they tell me I am not sensible when I try to raise the awareness. They only want to blame others.
That makes me angry and I dont want to share my experiences anymore.
Julia Brigitte Flesch
(from Germany)
PS. Sorr to ramble, but I was so angry today. If I had an E-Mail-address that would exchange e-Mails with hotmail I would have rather written you a private message.
But web.de (my e-mail provider) does not always send mails to hotmail.
Thank you for listening
please dont publish my e-mail address!!!!
Julia, I need to apologize to you, I saw your comment in my spam filter, set it to publish and it did. When I went to read it all, I saw at the bottom you asked for your email not to be published and yet your email appeared. I copied the comment, put it into the comment box, erased the email address and then published the comment sans the address. Then I erased the other comment. After doing all that, quickly to ensure your privacy wasn't violated, I went to read your comment and it had disappeared. I'm so sorry, I really wanted to read it and I don't know what I did wrong. Please forgive me - after all the work you put into writing it, it didn't get read. When you feel up to it if you could try again, I'd love to read it.
ReplyDeleteJulia, as you can see, I figured it out! Thanks for your comment, I, like you am a solution oriented person, blaming others or the system (even when there are often problems) gets no-one anywhere. I work with people and then if that doesn't work, I become annoying. It's good for people to share experiences, but without anger at a difference of opinion. That's what I like about the people who come here, we've had heated discussions but mostly in the mannerly of manners. One learns if one listens.
ReplyDelete