Teyani, thank you so much for taking the time and Herculean effort to explain your predicament.
I also have an invisible handicap, and while mine is not as dangerous and limiting as yours, it's gone on nearly 50 years. So what I want to speak about is your evolving reaction to it. I can so identify with the kind of courage necessary to continue on with life, keep mostly silent about it except to your closest confidants, finding meaning in the circumstances (if there is any!), working on holding a vision of yourself of uniqueness and value, experiencing episodes of disgust or minimization by thoughtless people, exploring the many avenues of treatment, and, the most challenging, holding out hope for health!
I echo all the other comments on your courage, grace, and earnest intrepidness! And I know the parts you don't speak about, when it all seems too, too cruel.
Thank you Teyani for this very clear (the garden hose image is a great one) description of your condition. And oh my goodness what a long road. Thank you also for the context this post provides. It helps to know where your words come from. May your current “flat” life contain joy and hope alongside all the rest, and may you and your doctors find a lasting solution so that you can be upright again. Blessings to you.
My friend Brianna in the Unfixed docseries has had multiple patches too, all with varying degrees of success but I remember her talking a lot about how much her life had to change to manage the excruciating pain, headaches, brain fog, etc etc etc. What a long, trying journey, and only compounded when people don’t understand why you’re not “fixed” yet. Holding you in so much love, wishing for you the best, most skilled physicians ahead, and bushels of peace as you navigate life in an unpredictable body. ❤️
You, of anyone, naturally understands, and I’m grateful for our friendship. My arms are held open wide receiving your kind wishes for me. Thank you dear one.
Thank you for these details, my friend, and sorry for the reality they reveal. The only reasonable thing to say, you've said it: "I am doing whatever I am able to in order to have a life once again." Don't tire in this.
I know all surgeries come with inherent risks, but do you at times imagine, "If only that doc hadn't punctured the dura in that June 4, 2020 procedure..." I imagine it's only natural to go back to that initial mistake that started this chain reaction.
Be as well as you can, and for what people cannot understand - because some things can only be understood by being lived - I hope you find the strength to bear the (additional) burden of having to understand them alone.
Hoping for definitive news after the next procedure, and hoping that hope remains the light during the waiting.
There has been a couple isolated times at first when I didn’t understand what was happening, and didn’t have the perspective I do now that I started to wish the original puncture never happened….. yet… I found that following that dumpster train of thought only made me cry. And crying feels worse. So I haven’t done that backwards look thing any more.
I have forgiven the MD fellow who was on his fourth day of his fellowship in the specialization of anesthesia… and I have forgiven the MD who “supervised” him.
I attempted a malpractice suit back in 2022, but no other anesthesiologist would testify in court that what the student did was outside the normal course of care. So it all got dropped.
I wrote a lengthy letter to that prominent attorney, bringing him up to date on what is continuing to happen with me, and asked if he would send along the information to the doctors involved in the major necessary surgery that began this… I never heard back.
I’ve never read anything quite like this, Teyani. The fact that you’ve come this far and are able to write about it is testament to your strength and determination to find the healing you deserve. My best wishes to you in your journey to restore your health.
The fact that you continue to share from your wisdom both publicly and privately is astounding. Wishing you strength for what still lies ahead -- and hope that you can get your life back.
My God. I cannot imagine what you are going through. I am amazed that you have been able to write any posts here on Substack and all with such compassion and humanity. I am so sorry you have to endure this. Praying for success with these treatments and surgeries. I am humbled by your strength and endurance.
Thank you Teyani! Much appreciated! You post made me consider, yet again, writing more about my own health issues that I have not written about. You are such an inspiration!
Teyani, thank you so much for taking the time and Herculean effort to explain your predicament.
I also have an invisible handicap, and while mine is not as dangerous and limiting as yours, it's gone on nearly 50 years. So what I want to speak about is your evolving reaction to it. I can so identify with the kind of courage necessary to continue on with life, keep mostly silent about it except to your closest confidants, finding meaning in the circumstances (if there is any!), working on holding a vision of yourself of uniqueness and value, experiencing episodes of disgust or minimization by thoughtless people, exploring the many avenues of treatment, and, the most challenging, holding out hope for health!
I echo all the other comments on your courage, grace, and earnest intrepidness! And I know the parts you don't speak about, when it all seems too, too cruel.
Blessings on your journey. nora ann.
Thank you for this beautiful comment Nora Ann.
Many hugs of compassion go out to you.
I hope that you too have been able to find encouragement and understanding from friends.
Thank you Teyani for this very clear (the garden hose image is a great one) description of your condition. And oh my goodness what a long road. Thank you also for the context this post provides. It helps to know where your words come from. May your current “flat” life contain joy and hope alongside all the rest, and may you and your doctors find a lasting solution so that you can be upright again. Blessings to you.
Thank you for your kind wishes Emily. Glad the metaphor aided in conveying what’s happened to me
My friend Brianna in the Unfixed docseries has had multiple patches too, all with varying degrees of success but I remember her talking a lot about how much her life had to change to manage the excruciating pain, headaches, brain fog, etc etc etc. What a long, trying journey, and only compounded when people don’t understand why you’re not “fixed” yet. Holding you in so much love, wishing for you the best, most skilled physicians ahead, and bushels of peace as you navigate life in an unpredictable body. ❤️
You, of anyone, naturally understands, and I’m grateful for our friendship. My arms are held open wide receiving your kind wishes for me. Thank you dear one.
Thank you for these details, my friend, and sorry for the reality they reveal. The only reasonable thing to say, you've said it: "I am doing whatever I am able to in order to have a life once again." Don't tire in this.
I know all surgeries come with inherent risks, but do you at times imagine, "If only that doc hadn't punctured the dura in that June 4, 2020 procedure..." I imagine it's only natural to go back to that initial mistake that started this chain reaction.
Be as well as you can, and for what people cannot understand - because some things can only be understood by being lived - I hope you find the strength to bear the (additional) burden of having to understand them alone.
Hoping for definitive news after the next procedure, and hoping that hope remains the light during the waiting.
Thank you, my friend.
There has been a couple isolated times at first when I didn’t understand what was happening, and didn’t have the perspective I do now that I started to wish the original puncture never happened….. yet… I found that following that dumpster train of thought only made me cry. And crying feels worse. So I haven’t done that backwards look thing any more.
I have forgiven the MD fellow who was on his fourth day of his fellowship in the specialization of anesthesia… and I have forgiven the MD who “supervised” him.
I attempted a malpractice suit back in 2022, but no other anesthesiologist would testify in court that what the student did was outside the normal course of care. So it all got dropped.
I wrote a lengthy letter to that prominent attorney, bringing him up to date on what is continuing to happen with me, and asked if he would send along the information to the doctors involved in the major necessary surgery that began this… I never heard back.
Thank you for reading and sharing your thoughts.
I’ve never read anything quite like this, Teyani. The fact that you’ve come this far and are able to write about it is testament to your strength and determination to find the healing you deserve. My best wishes to you in your journey to restore your health.
Thanks for dropping by and reading this epic saga. I appreciate your kind thoughts and understanding what a challenge these last five years have been.
The fact that you continue to share from your wisdom both publicly and privately is astounding. Wishing you strength for what still lies ahead -- and hope that you can get your life back.
Thank you for the kind thoughts and wishes Josh.
It’s my friends who are helping me thru this
My God. I cannot imagine what you are going through. I am amazed that you have been able to write any posts here on Substack and all with such compassion and humanity. I am so sorry you have to endure this. Praying for success with these treatments and surgeries. I am humbled by your strength and endurance.
Thank you Sarah. Your friendship and gentle understanding mean so much to me. I appreciate our interactions.
It is hard to take in as a reader. Cannot imagine what you have endured. Sending good energy your way.
Thank you Michele. I appreciate you taking time to read, and even more so to share your kind thoughts.
Teyani, You have been through so much. I really admire your strength and tenacity through it all!
Thank you Pamela. Sending you joy also
Thank you Teyani! Much appreciated! You post made me consider, yet again, writing more about my own health issues that I have not written about. You are such an inspiration!