Proximity

Physical Health:
We are still in Step 1 of the tentative treatment plan:

We have 1 more piece we are going to add in to try to prepare my body for treatment. If all goes well, we will slowly begin a treatment protocol in about 2 weeks. My most recent test results indicate that my immune system is struggling with the current viral load, and it is making it hard for my body to fight the other pathogens and release all of the toxins. As a result, my current main doctor wants to try to skip to step 2f above before going back to step 2a. She wants to try to reduce my viral load before moving forward with the tentative treatment plan. [Side Note: When people wonder why I still wear a mask in certain situations, viral load is a small part of the explanation.] It is unclear how my body will respond to this attempt to reduce my viral load, so please keep us in your prayers and/or send positive energy our way over the next few weeks.

I did have a 10-day window in the last 5 weeks where my fatigue was at a 7 instead of a 9, so that was fun. It is amazing how different I felt at a 7; I could actually function like a semi-regular human. Unfortunately, my fatigue is back to being a 9, but the 7 brought with it some additional hope.

My most recent test results also indicate that it is time for another round of two I.V. iron infusions, so I am working with my conventional medicine practitioner to hopefully get those 2 appointments scheduled in the next 4 weeks. The infusions may have an impact on when I start my treatment to try to reduce my viral load, so the timing of everything is tentative.

Overall, I am still feeling pretty terrible from a physical perspective. However, my doctor says that she is seeing progress due to the symptoms I am reporting to her, so that is good news. She says that I won’t feel much of a difference for quite some time since my body is in such a physical deficit.

Emotional Health:
Even though the last few months have been some of the most challenging of our life so far, I have been riding the waves like a boss. My husband and I really like my new main doctor. Since we started with her in late April, she has done an excellent job of listening and looking at both the big picture and the minute details. We never really know if a doctor will be able to get us to where we want to be, but we feel like she will at least help us move closer, and that is all we can really hope for each day. Taking it one day at a time is a must around here.

My birthday was a few weeks ago, and we did our best to celebrate in small ways since my options are currently limited. One of my friends from out-of-state came into town, and we hung out in my driveway. She contacted me a few months ago to tell me that she was coming into town, so we blocked off some time in the hopes that I would feel decent enough to hang out. She was so kind and understanding about planning it for the 2-hour window in which I had the best chance of feeling okay. I am fortunate to have a small group of people in my life who understand that making plans with me can be complicated due to all of my medical appointments, work schedule, fatigue, and various other considerations. Any plans with me have to be made well in advance, scheduled during the very small window of time during the day with the most chance of success, and considered tentative until the very last minute. I am certain that creating a plan to spend time with me is inconvenient and makes their lives more difficult, but they don’t seem bothered by it. They are kind and understanding and don’t make me feel like a burden or like I am not worth it. These are my people.

Jen Hatmaker, a popular best-selling author, has a new book coming out this week, and I was a virtual attendee at her book launch event last week. Jen spent a small portion of the event speaking about how her family and friends showed up for her during the crisis of her marriage falling apart. They didn’t know how to best support her during that time, so they just stayed as close as possible. She addressed her family and friends who were in the room with her at the book launch event, and here is what she said to them and to the audience:

“I just want everyone in this room to know that, if you love somebody who is suffering, it’s not magic. You can’t fix it. You can’t fast forward it. You can’t solve it. You can’t erase it. If you are willing to just stick close, that is everything. That is everything. You [pointing to her family and friends] healed me. I don’t have an imagination for what this story would be without you. I can’t even think of it. I can’t even imagine it, frankly. And so thank you for your incomparable proximity and love and presence, every one of you. I am the luckiest person in the whole world.”

I couldn’t agree more that proximity is the answer. I want to thank the people in our life who have not known what to do during this difficult time for us and have stayed close. Proximity is always the answer — physical proximity and emotional proximity. The people who have been uncomfortable because they don’t know how to help — but they have stuck with us and have continued to try to support us in the ways that we have needed most — these are our people. When in doubt, proximity is the answer. Making sure people don’t feel alone is always the answer.

In addition to my flexible and understanding friends who schedule time with me in advance, I also have people who continue to stay close via text and email. One of my former students who graduated in 2013 sent me this message for my birthday:

He doesn’t have to remember my birthday 12 years after he graduated from high school, but he still remembers.

I also had one of my closest friends text me this message:

Then, there are the people who stay close by letting me know that they are reading my blog posts. They want me to know that I am making a difference by being vulnerable and sharing my story. One of the friends that I mentioned last week in my Driving Down the Highway post, who reads my posts as soon as she gets the email notification, sent me this message immediately after reading that post:

And, of course, there is our amazing therapist. After my Waiting for Science blog post a few weeks ago, we were emailing back and forth about therapy appointment dates and times, and she included this message in one of her emails:

I am fortunate to have a few people in my life who know how to stay close — physically and/or emotionally. They have been in the uncomfortable place of trying to support us in the unknown, and they have chosen proximity over comfort time and time again. They have read what I have stated are the best ways to support us (see my Support page if you need a refresher), and they have done those things even when they have felt uncomfortable and/or don’t feel like they are doing enough.

To the people who have stayed close: Thank you! You are our people, and we are grateful for you!

Brutal. So many unknowns all of the time.

Beautiful. A 10-day window of feeling a little less fatigue. Making (slow) progress. A doctor who is listening and paying attention. My birthday! Our people who have stayed close during the most difficult times of our lives.

Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.