Dear Friends,
I am so eager to share this realization: I am not a burden. But I need to believe it and trust my support team enough to be completely honest with them about my needs.
I don’t know why, but this year I started hiding parts of myself from Tara. She had done nothing wrong. In fact, she is a dream ally! We enjoyed complete transparency between us for a few years. But this year, I started closing off a bit.
I just started feeling how I was taking so much of her energy and time. I sensed how tired she was and how much she was juggling. I hated being part of her load.
So I started pretending I didn’t want to do things with her. I claimed I was too tired, even when she double-checked with me. I lost my joy from this. She finally confronted me about this, and I admitted I had been dishonest because I didn’t want to be a burden. She was kind about it, but also a bit hurt that I would be so dishonest with her. She said “our relationship is one where we have complete transparency and I rely on you to be honest with me so I can better support you. I will tell you myself if I am too tired to do something. You don’t make that decision for me.”
It was so meaningful to hear that. But I still am having trouble being honest about my needs. Last week, I played in the ocean with Shay. I got a bit chilled. Tara made sure I had warm water to rinse off with, and warm dry clothes, but I didn’t put on my fleece. We walked to lunch and ate outside. She checked with me if I was too cold. I said no both times. But I was! It would have been easy to warm up – the restaurant had nice warm blankets I could have used. But I was shy about expressing my need. It sounds silly now.
I got too chilled and started feeling sick later in the day. And dysregulation kicked in so intensely! I had been so calm for weeks, but this was one of my worst nights in a while. I was aggressive toward my mom and I hated myself so much for it. It took me a couple of days to calm down.
It was so pointless for me to not be honest with Tara about being too cold. I just caused real stress instead of allowing her to get me a blanket. She now knows to be more proactive and to step in when it seems reasonable to assume that I need something that I am not asking for. We don’t love this, since my agency with spelling is so precious. But it is where we are now.
I am feeling better now. Thank goodness! I am so confused by my shyness to ask for help even when I am asked if I need it. And Tara is so amazing as an ally and has not done anything to discourage my honesty. I guess I need to examine how I feel about being so dependent on support. It is complex!
I hope all of us find a place in this life where we can be supported and not feel ashamed of it.
Your Friend,
Danny
Danny With Words 
Dear Danny, Thank you, thank you, thank you! I am so grateful for this authentic and deeply honest post. As a caregiver it is so challenging to express what an opportunity Joel provides me and to have him believe it. I have a purpose in this world because, through him, I have been invited into the world of nonspeakers and it’s a world I had no window into until Joel invited me into his life. (I believe we choose our parents.)
I gave myself tears reading how Tara told you that she is the one who will tell you if she doesn’t want to do something with you. She is a strong woman and the type of experience you describe between you and her happens between me and my partner, John, often. It’s not something unique to your relationship with Tara. I believe in any close relationship there can be a hesitation by one or both partners that having their own needs fulfilled may be at the expense of the other person’s needs; however, when we each are honest about what we each want to do then we are never a burden. I know that I am always choosing, in every moment, to do what I am doing. No one can make me do anything. Choice is power.
I so appreciate your honesty with yourself and that you are so brave to share your journey towards greater authenticity with all of us. Thank you, thank you, thank you! With ongoing gratitude, Kari (Joel’s CRP and mom)
LikeLike
Dear Danny, One more thought about your post below. Im always interested in heading for what I want instead of what I dont want. Its kind of like walking forwards instead of backwards less falling when walking forward and saying, I am not a burden sounds like not want to me instead I rephrase it in my head to be I AM AN OPPORTUNITY. Thanks again for your brilliant sharing! Kari
Sent from Mailhttps://go.microsoft.com/fwlink/?LinkId=550986 for Windows
LikeLiked by 1 person